Loading...

Follow Chronic Illness Trauma Studies on Feedspot

Continue with Google
Continue with Facebook
or

Valid

I mentioned in yesterday’s blog post that I’ve been nominated for two #WEGO Patient Leader Awards. We have two weeks to make it happen and voting is open until Sunday, July 28th.

Winning an opportunity to attend the HLTH Conference in October and to connect with other patient leaders and innovators in health care may be a long shot – or it may not be.

What excites me most about this opportunity is that winners get to speak to representatives from medical schools, health insurance companies, Mayo Clinic, organizations focusing on specific diseases such as the Juvenile Diabetes Research Foundation (JDRF), other patient leaders, and more.

Endorse Me – or “Add a Nomination” to Leave a Comment

Why A #WEGO Patient Leader Win Matters

I feel quite uncomfortable promoting myself, yet my passion to open medicine’s eyes to the huge body of evidence explaining how adverse life experiences shape our health keeps calling and pulling at me.

It’s why I blog and why I spend so much time integrating and writing about the research.

Medicine has trouble keeping up with the science. It’s the nature of the beast.

But out of ignorance, medicine continues to cause harm to patients through unrecognized bias, judgement, shaming and out-of-date notions that anything to do with trauma implies a psychological cause or that it’s all in patients’ heads.

Health care professionals still routinely think symptoms are due to laziness or pretending (read Gary Sharpe, PhD’s thoughtful story about his recent hospitalization for a crisis of his early onset Parkinson’s disease).

So I’ve created this post for any and all of you who want to help me spread the word (and a huge thank you to all of you who have already endorsed me!).

For everyone who wishes their doctors and nursing staff, their friends and family and colleagues could “get it” about the very real and painful effects of trauma.

I need your help to make this possibility a reality.

I can’t do it without you.

So for all of you who want to maximize my – and our – chances of planting the seeds about the trauma science, here’s how best to help.

Best Ways to Make Your Vote Count for #WEGO Patient Leader Award

1. Endorse me in 4 clicks
  1. Click on the button below, go to my #WEGO profile page, and click “endorse” just below my picture.

Endorse Veronique for a #WEGO Patient Leader Award

2. OR Take 5 steps and leave a comment: it might make all the difference

“Add a Nomination” & Leave a Comment

Step 1– click the link above and go to the orange button to “Add Your Nomination” below my profile picture

Step 2– pick a category such as Best in Show: Blog, or Patient Hero (you can keep it simple by selecting one of these I’ve already been nominated for rather than looking for a new one)
Step 3– provide a link to my blog or facebook page as requested. Below are links you can copy and paste if that makes it easier for you:
Blog Link:
Facebook Link:
https://www.facebook.com/chronicillnesstraumastudies/
Step 4-leave a comment
Step 5– Select your area of interest (such as your specific chronic illness or mental health condition, or adverse childhood experiences (ACEs) etc
If you are wondering what to say in a comment:
  1. Describe what has benefited you most from my blog (posts? ebooks? the information itself?)
  2. What has been helpful about understanding trauma?
  3. What is useful about understanding the science or the mechanisms of trauma?
  4. Has anything I do made a difference in your life or with your chronic illness?
  5. How does my work help in LIVING with chronic illness – such as alleviating feelings of aloneness or despair, fear or shame, or validating what you’ve suspected etc?
3. You can endorse or nominate for more than one award

It seems to be easiest to make another endorsement or nomination by starting over on my profile with the button below:

“Add a Nomination” & Leave a Comment

Here’s Why Leaving a Comment Could Help
First, someone at #WEGO reads and approves every nomination – and therefore reads every comment. Leaving a comment – in and of itself – provides information about trauma.
Second, #WEGO Patient Leader winners are selected from 5 finalists in each award category.
The 3 Patient Leaders with the highest votes automatically become finalists.
Two additional finalists are selected by the judges.
The judges and committees then select a winner from among these 5 finalists.
Judges look at a Patient Leader’s profile and outreach to make their decisions. So it’s not just about having the most votes.
Share and Invite Others to Vote

Voting (by endorsing me) is open until July 28th.

  • Share this post on your social media outlets and ask your community to endorse me
  • Share the #WEGO endorsement posts I put on Chronic Illness Trauma Studies’ facebook page (and sign up to follow me there to stay up-to-date)
  • Vote!! You can endorse me for more than one type of award
  • Tell your friends, family and colleagues in the field of trauma to vote.
  • Write an article on your blog or other platform about why the role of trauma is important to you – and then suggest endorsing me

I’ve created the video below to help spread the word – I feel pretty shy and have gotten stressed about putting myself out there so strongly –  but maybe it will help realize my mission to educate health care providers and help spread the word to others with chronic illness.

Chronic Illness Trauma Studies - YouTube

If you want to learn more about what a #WEGO Patient Leader is and more, here’s a #WEGO awards FAQ and The HLTH conference FAQ.

Thanks everyone!

Current Status: 41 Votes and 5500 Blog Subscribers

As of Saturday evening when I’m writing this blog post, I have 41 votes.

Based on what I’ve seen of other Patient Leader Nominees, we need at least 175 votes to be even for today, and possibly as many as 1000 endorsements based on at least one other Patient Leader nominee I’ve seen.

With over 5500 subscribers to Chronic Illness Trauma Studies (CITS)  – we’ve grown!! and it’s so wonderful to have you all here! –  and other communities I’m part of and will be posting in – it seems reasonable to go for it.

We have 2 weeks – until July 28th – before voting closes.

Have fun with the endorsing, sharing and commenting – and thank you everyone for being a part of the CITS journey!!

I’ll keep you posted.

Endorse Me – or “Add a Nomination” to Leave a Comment

The post Let’s Inform Health Care About the Science of Trauma: Endorse Me for the #WEGO Patient Leader Awards 2019 appeared first on Chronic Illness Trauma Studies.

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Hi everyone! This is my first post since April and it feels good to be back :-). Before I tell you about my adventures with healing multigenerational trauma, one of the updates is that I’ve been nominated for a #WEGO Health Award as a Patient Leader for Best in Show Blog and also as a Patient Leader Hero. I feel so honored! Winners get to speak at a conference with Health Industry leaders and other Patient leaders so if the role of trauma in chronic illness resonates with you, you can vote until July 28th by 1) endorsing me (by clicking the “endorse” button below my #WEGO profile picture), and 2) sharing my #WEGO link on your facebook and other social media pages to invite others to support my nomination.

Patient leaders with the most votes have the best chance of winning and the opportunity to speak at the conference. Thanks so so much for the nominations Cheryl and Michele, and all of you who read my blog, who comment and write to me about the difference it makes, and for sharing your stories and your journeys of healing xoxo.

* If you’re wondering why you’re receiving this email it’s because you either subscribed directly to my Chronic Illness and Trauma blog, or because you downloaded one of my free ebooks or other documents in exchange for your email and being subscribed to receive posts. If this isn’t what you were expecting, you can unsubscribe from the bottom of the email anytime.

Today’s post is about what I refer to as “Adverse Multigenerational Experiences” (AMEs), a term I’ve coined to build on the adverse childhood experiences (ACEs). I’m going to tell you about my adventures of the past few months and the process I’m working with for healing multigenerational trauma and chronic illness, using an approach called Systemic Family Constellations. Note that I’m not trained in this approach and that what I share is simply my opinion from what I’ve read, watched in documentaries, discussed with others, as well as observed and experienced personally, which may or may not be an entirely accurate understanding of the work. It’s only been a few weeks since my Constellation and I share the initial wisps and shifts I’m noticing.

Free PDF of this Blog Post + Infographic

the download form will appear momentarily

In the past few months I’ve been immobilized by unexpectedly intense feelings of fear and anxiety, profound grief, shame, self-doubt, the occasional fatigue attack, and the often added feeling of “wanting to go home” – back to the other side, to the world of spirit where I come from, where I am okay, everything feels safe and doable, and love abounds.

These painful states slowed me down to a crawl and to the point where I couldn’t write a blog post.

Knowing me, you’ll guess that I saw this as some kind of trauma response.

So I worked with it using trauma therapy. The surprising result was something that flashed before my eyes during an EMDR (eye movement desensitization and reprocessing) session.

In that flash I saw Stephan Hausner’s name for a fraction of a second. Stephan is a Systemic Family Constellations facilitator in Germany – an osteopath, naturopath, homeopath who also trained in Chinese medicine before landing upon the approach he’s gravitated to for the past 25 years – an approach for healing multigenerational trauma and it’s many different effects.

What is Systemic Family Constellation Work for Healing Multigenerational Trauma?

Family Constellation or Systemic Constellation work (which is a term that reflects how the work orients to different kinds of systems, and not only family systems) is an approach originating primarily with Bert Hellinger, another German man who I mention in my books and therapies for healing nervous system perceptions of threat as a way of working with chronic illness. I use the terms interchangeably since both are widely used even as I like the widest possible view of this work (here’s more on experiences that influenced Bert Hellinger’s development of this approach).

From a Systemic Constellation perspective, symptoms and chronic diseases arise because something in a family system has been excluded, or not recognized, acknowledged, dealt with, or known.

It finds that something has not been respected, resolved or honored in some way (miscarriages, deaths, former partners, trauma that prevents family members from connecting and moving forward in their lives, and much more). The effects of trauma within a family system often result in disconnection in some part of this group, often between parents and children.

Deep down the exclusion is an excessive demand in a traumatic situation in which you did not have sufficient resources to address this issue in a good way.

The exclusion is a form of self-protection to survive.

The experience is that these unresolved contents do not keep quiet, but are shown in the body or sometimes enter in later generations as children or grandchildren and show up as symptoms (from an interview with Stephan Hausner translated by the online Google translator).

Constellation work, in other words, finds that chronic illness and other symptoms reflect unresolved trauma in a family system.

In this way of working, chronic illness reflects a systemic problem that is seeking resolution, rather than a personal issue that belongs to the individual with the symptoms.

The Systemic Family Constellation approach is a potent, empowering, and respectful way to think of chronic illness.

It’s also hugely respectful and non-blaming of all members of a family system – regardless of what they have done (such as leaving, abusing or harming others or other perpetrating behaviors) or not done (such as not connecting to others in their own family including their children or spouses…), how they have coped with it (such as by leaving), and more.

I paraphrase something Stephan described it this way at the workshop I attended:

The respect we have for family is not about condoning difficult, abusive, disconnected or other behaviors.

It’s about recognizing that if we, ourselves, had experienced similar circumstances, grown up with similar traumas, had the same family history, lived through the same events etc – we might also have acted in the same way.

Through such a lens of curiosity and non-blame, this approach for healing multigenerational trauma examines family patterns to either help clarify an issue so the person with symptoms can have a greater capacity to find their way into letting go of what is not theirs – or to relieve or even heal the family systems’s unresolved dilemma(s).

The result is that chronic illness and other symptoms often resolve – sometimes completely and rapidly – through this approach.

More on Constellation work in a moment.

My aunt gave me this tiny owl “stuffie” a few years ago and I have found it comforting to hold and laugh about and with. So I brought it on my trip :-). This is my departure gate on the first travel leg of my adventure.

To get back to the “flash” – I learned of Stephan from a friend I made during a prenatal / perinatal healing workshop I attended in January (also in order to heal some of the deep and challenging symptoms I’ve been seeking to recover from). I had tucked Stephan’s name deep inside myself for a time when it might feel right to pursue.

And then there he was – his name subtly flashing across my inner screen like a flag waving in a gentle breeze, telling me this was my next step.

Trusting and following this impulse was a major process.

It lead to my decision to attend Stephan’s only workshop on US soil in July, in New York, which required the effort of traveling, finding lodging and planning meals. By the time the workshop had to be unexpectedly cancelled in early June, my symptoms were so intense, my husband and I so weary from working and being with the misery I was in, and the impulse so clear, that I did the only thing I felt I could do.

I followed him to Spain.

Because that’s what one does on this profound, winding road of healing. That’s also the degree of motivation we get from living with chronic illness and so many other difficult symptoms.

It’s what you do when you listen to your body, check-in with loving care to make sure the impulse feels true and real (and not an exciting distraction to help you escape from the emotional and physical pain), then trust the message and gather your courage to follow it.

I had gained just enough capacity to make such a trip happen, including continued gradual improvement in my energy levels and from regaining my ability to eat most foods last fall when I healed another layer of trauma in my family system (more to be shared in the future).

Despite it taking all my focus, time and concentration for a month + of preparation; flight delays, reschedulings and cancellations (travel is an adventure all to its own!); needing to spend a few days in bed at Amalurra after the workshop (which I had scheduled into my trip just in case); needing long gentle days, much of it in bed after my return (and more recovery time still to go now, in early July), it was even more than I had cautiously but optimistically hoped for.

My experience, in other words, was wonderful confirmation that the impulse had been real and true.

It reaffirmed how following what comes from the deep intelligence that lies within each and every one of us – and within our symptoms too – can help us find our way.

My Adventure in Healing Multigenerational Trauma

The Family Constellation workshop I attended was held in this beautiful circular building filled with light at Amalurra.

The workshop I attended was held at a rural retreat center called Amalurra in the Basque country of northern Spain.

Amalurra – which means Mother Earth – was founded by  Irene Goikolea, a Basque woman with a PhD in Depth Psychology from Pacifica University in California (among many other studies, journeys, and travels). You can learn about her and her work in her moving video at the bottom of her page, where you’ll also see the inside of the space where I participated in the Systemic Family Constellation work, sitting in a large circle as they did in her workshop in her video.

Irene’s goal has been to support the process of deepening and refining ourselves in order to be the best vehicles of change and as fully on our paths as we can be. Stephan has been conducting annual Constellation workshops at Amalurra now for about 10 years as one of the kinds of work that facilitates this process.

I felt supported by the energetic field of this rural retreat center from the moment I first arrived – after a more-than 24-hour trip and landing at 9pm local time instead of my originally scheduled noon.

I had the quietest, loveliest ground floor room and all of my meals were included. I heard cow bells through my open bedroom window at night, and not another sound.

The unexpected tender and heart-lifting bonus came from the people I met. Probably 90% of the 35 or so participants in the workshop were from the Amalurra community.

They made me laugh. I felt like smiling almost all of the time (other than when I was crying during my own Constellation process :-). They felt connected and connecting, and touch was a common part of conversations. Easy, friendly, connecting hands on your arm, real hugs, or cheek smooches are a part of everyday greetings, even as there is an awareness of space and a complete lack of intrusiveness.

Some of the group approached and talked with me, not at all shy of my broken Spanish (although to be fair to myself, I do speak some Spanish and am not afraid to just keep trying :-) even if it comes out not quite right).

Some offered to show me around their beautiful city or take me to their (and my) favorite place of all – the ocean, which was only 30 minutes away. I was invited for lunch or to stay at their homes and spent the last night of my trip with a nurse who has travelled the world and who took me to the airport at 6am the next morning on her way to work.

I felt cared for. I felt seen and accepted for who I was, even in my relatively quiet state that felt the most comfortable in my new environment. It helped me accept this introvert part of myself a little more too.

What an awesome part this was in my healing adventure.

Setting Up My Family Constellation

In short, I was able to do a Constellation. I’m still integrating, although it feels like the process may be helping to lift a layer off of my chronic illness experience.

I summarize what happened in the following way for now, as best I understand it and while I give my process the space to percolate and integrate further.

Reading Stephan’s book and slowing down to be with the difficult feelings I was experiencing over the past months helped me recognize that these feelings were ones I had lived with throughout my childhood.

I suspect these overwhelming emotions eventually increased from an accumulation of other unresolved events, to a point that my system shifted into a hibernation-like state of freeze, which I experienced physically as chronic fatigue (ME/CFS).

Stephan’s response when I explained the feelings of “wanting to go back home,” having been immobilized by chronic fatigue for 20 years, and now having immobilizing emotions, was that it would make sense to experience immobilizing symptoms as one way my system prevented me from actually following that impulse – that these symptoms were a way of keeping me on the planet long enough that I might find my way into my own life.

One of his first comments in my process, in other words, was to acknowledge the intelligence behind the symptoms.

I was then guided to select representatives for myself, my symptoms and for the family members that Stephan had gleaned through our conversation appeared to be relevant to my question and concerns.

Representatives in Systemic Constellations

In Constellation work, you select representatives for relevant symptoms, issues, relatives and others from your group of fellow participants. Sometimes you yourself place them in the circle where it feels right to you as you slowly follow your intuition as best you can. Sometimes they are invited to place themselves where it feels right to them.

What representatives have in common is that they take on the sensations, emotions, or attitudes of the people or issues they have been asked to represent.

This isn’t done consciously and representatives usually have very little – if any – information.

Trying to understand why it is that people can manifest what others have experienced is one of the areas that brings up a lot of questions from those unfamiliar with this work. And yet we all know what it’s like to step into a room and immediately feel warmly welcomed, or have a sense of sharp static electricity or an impulse to leave before you’re seen because maybe there’s been a fight or conflict, or to feel the temperature drop when two people have just stopped talking or don’t want to say another word to each other.

Our bodies, in other words, pick up on what is in the energetic field – whether near or far.

Psychiatrist Stan Grof and others research and explore this from concepts such as “non-local mind” and other perspectives. For now, it remains unclear just how Constellations work.

Once representatives are in place, you watch with your facilitator, and observe what arises for them and what their impulses are. This gives you information for next steps in the process of discovering what is happening in your family system.

What we witness tends to be jaw-droppingly accurate for our own personal history – often demonstrating family patterns, secrets and unresolved issues you may not even know existed until you verify what you were shown with a family member.

How representatives tap into the energetic, non-local field to reflect events so accurately is not clear – but it happens in a reliable way in this type of work. It’s a vital piece to how it supports healing – including when you are selected to be someone’s representative and it turns out to help you recognize and heal something that is relevant in your own life.

Symptom Representatives

Stephan asks the constellating person to select a representative for their symptoms. How these representatives feel and behave on their own and with respect to the person’s representative and other family members informs the process. So does the way others relate to the symptoms.

Symptoms and representatives can reflect all of the different kinds of relationships.

A client’s representative may walk away from their symptoms in fear or hate; they may stand next to the symptoms as close friends, perhaps while caught in the tension of a family issue or standing far away from the family because there is too much pain or conflict or tension, or because something stands in the way of their leaving or stepping into their own lives. Symptoms and clients may also relate to one another as if they are allies. Sometimes symptoms are the only way a client can survive in an untenable, inescapable situation or tension-field or “function” they serve in their family system.

These relationships helps identify what is missing, excluded, unacknowledged and unresolved in the family system.

The behaviors demonstrated by symptoms can represent unresolved trauma a client experienced when their mother or father left, or because they died when the client was young, or because their parent lost a loved one at a critical time in their own lives. They may represent what a parent or grandparent had to do to survive, such as having committed atrocities when forced to serve in a war. The symptom may therefore represent a parent’s loss,..

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

I’ve just updated this 2015 post of helpful tips after using them to follow an impulse that “wifted” by during a trauma therapy session this week. I’m trusting the “wift” (see #1), taking the leap, and have registered for a Constellation workshop (short & long descriptions) to help heal an old pattern that appears to stem from multigenerational trauma. My healing continues in the best of ways and I send you the warmest good wishes on your journeys, whatever they may be :-).

While treating trauma is an important tool for improving our health, following impulses for pleasure is an aspect of trauma therapy that can be used in everyday life as a way of working with an overactive nervous system. It’s a way of listening so you can heal social nervous system functions and support chronic illness recovery. It is accessible to everyone. Plus, it’s free.

For those of us living with chronic illness there is something powerful in honoring our impulses for greater ease, connection and other forms of pleasure. It’s not about giving up on things that take effort, but about letting our nervous systems show us how to shift gears.

This post is part of a series on resources and pleasure, which is #1 on my list of 10 tools for healing chronic illness.

Going for pleasure is about following the easy-to-miss cravings that can gradually lead us out of painful physiological states that get stuck in “doing” modes or in “being on guard.” These are states caught in a cell danger response of fight, flight and freeze. And it’s not psychological.

As described in another post of the series, the impulse for pleasure is not frivolous.

It is actually a way of supporting a different gear, of accessing a state that helps us rest and recover, tend and befriend, connect and settle.

This is the providence of our Social Nervous Systems, also known as “The Vagus.”

This branch of the parasympathetic nervous system is able to put a lid on fight and flight, hypervigilance, and anxiety. It is capable of keeping your heart rate, thyroid function, immune system and blood pressure in check when action, self-protection, and defense are not needed.

When our Social Nervous Systems are engaged, they are also capable of reducing and softening freeze states that can make us feel exhausted (see a detailed post about the freeze state of chronic fatigue syndrome and why it’s not in your head) or emotionally numb, disconnected, or hopeless.

7 Tips That Will Help Heal Social Nervous System Functions by Exploring Impulses for Pleasure

The idea of exploring impulses for pleasure got me started on a way to allow room for pauses, rest and greater simplicity in my life.

I continue to explore and refine the process and I am a different person now for having cultivated this practice. The process was the beginning of a journey that has gently been helping me reclaim my whole self.

Below are some tips I’ve learned along the way.

1. Pay Attention

The impulses for pleasure are often subtle. In my own life they seem to waft through my mind like a wisp of smoke – they “wift.”

Here one moment, gone the next.

These impulses are therefore easy to miss amidst the activity of daily life.

Sometimes they come with camouflage, like the toad hiding in my flower bed in the picture below.

Hone your skills for noticing these often momentary signals by setting an intention to do so.

You might prime the pump by writing down some of your hopes and dreams (big or small) and then seeing what shows up in the next day or week.

Let your attention wander during down times to find these impulses, such as when you are taking a shower, waking from a nap, or even watching a movie, especially if it’s one that makes your heart sing. What calls to you? What does your body, or your heart, or your soul desire? What does it want to do, see or say in this moment?

2. Don’t Brush it Off

We live in a culture that prioritizes accomplishment and activity, where “doing nothing,” sitting on the porch, or slowing down and pacing yourself can be seen as a waste of time.

Many of us grew up in a culture or in families where it was difficult to take personal time, to say no, or to slow down without feeling as though we were leaving someone else to do all the work.

Slowing down may have felt like we were being weak or “too soft.” Instead of denigrating, denying, dissing or delaying your impulses for pleasure, allow for them. Use the validation from science if it helps and give your wishes a little credit. Then you can start inviting them in, honoring them, and checking them out.

This is how you can listen for impulses that heal social nervous system activities, and in the process, help your process of recovery from chronic illness and other chronic symptoms.

3. Include Will Power

We tend to use will power to push through challenging tasks, to get things completed, or to make it through difficult days.

Let yourself allot some of your will power to making room for pleasure and following some of those impulses.

Make time and save energy for the small things. The easy things. Start there.

4. Experiment

Sometimes it takes practice to differentiate between impulses that feed us and make us feel even one little bit better – and those that aren’t quite right or that leave us feeling unsatisfied, overwhelmed or disappointed.

Learning the difference is part of the practice.

The most important qualities of an experiment are to start from a place of curiosity and nonjudgment.

Think of it as a learning process where there is no good or bad outcome, only information.

Learning to follow impulses that have meaning or that help you feel something new or supportive can take time. It can also take self-compassion. The rewards are worth it.

Use an attitude of experimentation when you follow an impulse for pleasure. This is how your social nervous system tells you what it needs. This is how you learn what’s helpful or supportive and worth trying – and what might not be worth doing again.

  • Observe what it’s like to try it out – is it easy? exciting? engaging? scary? stressful? settling? – just watch, don’t judge.
  • Notice what happens as you proceed – does the easy get easier? does the excitement give you a smidge more energy? does the stress change into action or into fear? do new ideas or solutions come to mind? watch, and stay curious.
  • Watch how your body, your feelings or your thoughts change – it can be subtle. Do you get a little warmer or cooler? A tad more spacious in your body? Do you start to relax or settle a little? tense up? Is it tensing in preparation or tensing in self-protection? – keep watching and again, don’t judge.
  • Noticing what happens gives you a sense of whether following an impulse is interesting (or not), appealing (or off-putting), “neutral,” or neither seemingly useful nor meaningful. All of this is information.

Now, give it time.

Sometimes you need to follow an impulse all the way through to learn what the outcome feels like.

If it scares or stresses you a little this is not necessarily a bad thing – it may be that you are taking a risk for something important.

Sometimes you will realize it’s not a good fit or that it feels like too much or like a burden.

Other times it won’t be until you’ve let yourself talk with a friend or spend time at the beach or go for a walk that’s a little outside of your norm, to realize that something has shifted and you feel a little calmer or grateful or kind with yourself. This is all a part of testing things out and experimenting.

5. Keep it To Size

Many of us with chronic illness have limited energy and can’t go out, go very far or do very much. We also have nervous systems that are sensitive to even too much of a good thing (this is because the sense of pleasure or safety may not have been a large part of your experience in childhood or may have been difficult to be with due to actual threat from family or home life in the past or in past generations).

Impulses for pleasure can – and often need – to be very simple to start with.

If the impulses you are having are too big to follow right now, gently put them aside and go for those that fit more easily within your capacities.

This is another step in how to heal social nervous system functions and how it guides us to support this process.

The little impulses can be as simple as:

  • calling a friend – or emailing if the phone is too much
  • putting on nail polish or, if you’re a guy, shaving off a few days of scruffy beard (or NOT shaving)
  • taking a (short or long) bath instead of a shower
  • taking a day off from thinking about work / your health / pain / or looking for solutions….
  • cleaning out a corner of your garage, a cupboard or a single drawer
  • purchasing a blanket in a color or texture that feels soothing or digging the special one out of your closet
  • putting a picture or a clipping on your wall or, even simpler, placing one on your bedside table where you can see it if you spend a lot of time lying down etc.

6. Keep Paying Attention

Even pleasurable activities can turn into large or tiring projects.

If you try something and then feel done before it’s complete, trust that and see what happens when you stop or take a break.

7. Stay Open

Pleasure can take many forms. The impulses are unique to you. Pleasure does not always show up as something slow or restful.

Over time you will get a sense of what feels truly satisfying or resourcing for you, even if it might feel like a burden or a task to someone else.

Maybe doing the dishes and having your hands in warm soapy water feels comforting, for example. Or maybe reading a book of nonfiction and taking notes is your idea of a good time (it’s one of the things I personally love doing ).

Keep experimenting to see what ends up feeling resourcing to you.

A few more resources

The year before leaving medicine I started working part-time in order to make more room for life and play.

Two books – Living the Simple Life and Simple Abundance (the latter book was written primarily for women; the author has since put together a similar book for men) – were particularly inspiring to me at the time. They helped me create the space to keep moving in the direction of more ease. They inspired me to keep listening for what my soul was craving.

These books are just as relevant for me today and when I first wrote this post in 2015 (which I’ve updated primarily with new pictures), I had just picked them up from my library to read again for the first time in nearly 20 years.

While at the library, I found a new book that encapsulated the process of what it means to follow your impulses for pleasure. It soothed and calmed and inspired me. It gave me a sense of joy. It called up feelings of love and connection and gratitude.

Stir is Jessica Fechtor’s memoir about her brain aneurysm and what happened after it burst – the challenging journey, the multiple surgeries, as well as the complications. In reality, though, it is about her love of food. Jess loves thinking about ingredients and combinations. She feels fed and nurtured when planning meals and making grocery lists, picking what has appeal and meaning from the shelves, baking and creating with love, and sharing meals with friends and family.

This craving and passion repeatedly pulls her onward and through as she grows and changes and stays the same and heals. It’s one of those books that I was sad to finish. It also left me with a comforting feeling of being home, just where I am.

Related Posts & Resources

Making Time for Things that Resource Us

8 Steps for Healing through Impulse And Play: Treating Chronic Illness #1

Treating Chronic Illness #1.2: 9 Sneaky Ways to “Act Out”

10 Empowering Tools for Treating Chronic Illness: Building on lessons from brain plasticity, epigenetics, and trauma

The post Shhhh… Listen! Do You Hear Your Social Nervous System Calling? (Healing Chronic Illness Tools #1) appeared first on Chronic Illness Trauma Studies.

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Adverse babyhood experiences (ABEs) are a subset of adverse childhood experiences (ACEs).

I’ve coined the term ABEs to refer to stressful events in mothers in the 2 years before conception and in mothers, fathers & babies during pregnancy, birth and until a child’s 3rd birthday. ABEs increase risk for chronic disease and mental illness later in life and in future generations.

Hundreds of ACE studies show that trauma experienced before our 18th birthdays greatly increases risk for chronic disease, mental illness and other effects. I’ve summarized the ACEs research in 1 page fact sheets and accompanying blog post here.

I’ve created ABEs because of the hundreds of different studies explaining how adverse events during the earliest time period affect risk for these diseases too.

ABEs apply slightly different perspectives to help recognize and repair effects of early adversity. They offer an additional set of tools to prevent or decrease risk for long-term effects such as chronic disease. Understanding ABEs offers hope for everyone.

Introduction

Why The Term ABEs?

I’ve coined the term ABEs as a subset of adverse childhood experiences (ACEs) for the following reasons:

  1. ABEs reflect a distinct set of risk factors for chronic illness
  2. ABEs can increase risk factors for ACEs
  3. Understanding ABEs provides new opportunities and tools for earliest prevention, detection and treatment of chronic health conditions
  4. Acknowledging ABEs increases choice and tools for adults with chronic disease & other effects, parents of children with chronic conditions, & health care professionals
  5. ABEs refine ACEs awareness that risk includes events in pregnancy and birth
  6. ABEs awareness offers tools to improve health care practices & improve health for all
  7. The ABEs term aligns with the ACEs research and builds on ACEs name recognition
Who is ABEs Information For?

One of my intentions in creating ABEs awareness is to offer the evidence needed for health care professionals to better understand and support people with chronic disease and other health conditions. Understanding ABEs also invites compassion.

I introduce ABEs to facilitate a wider change in medical practice, obstetrical and neonatal care.

My other primary intention is to provide this little-known, often difficult-to-find, well-documented evidence for people with chronic illness. This is because of the strength of the science that offers a new paradigm of disease and insights that offer more tools to improve health.

This post is also for parents of children with chronic disease and other health conditions, who often have a hunch that early adversity affected risk and who are looking for the validation and tools to support healing.

Like the adverse childhood experiences research, ABEs awareness needs to become a part of medical school, residency training and other health care professional curricula. It also needs to be reintegrated into awareness in our society as much of this information is well-known in older societies (Scon,2007).

If you are planning a pregnancy or wanting to become better informed about how to optimize your baby’s health, I recommend a series of shorter, gentle posts that provide similar information with an emphasis on resources rather than problems. The next section includes those references.

Gentle Resources

Reading about adversity and trauma can be illuminating. It can also be distressing.

One way to gain more understanding about potential ABEs is to notice areas where you experience a “twinge” or “snag” as you read. Consider these areas with curiosity, gently, with compassion over time, and in a safe, comfortable place. Consider the added resource of a supportive friend, family member or colleague, or a skilled therapist.

Another way is to read gentler sources of information that focus on resources rather than emphasizing the research on all the risk factors for disease, as I do in this post.

I recommend the following books and articles for everyone and especially for parents and for those who are pregnant or getting informed prior to getting pregnant. I also recommend them for anyone who would like a sensitive, supportive introduction to this new paradigm of health.

Links to the following resources are included in the free downloadbles:

Resources for people with chronic illness and other health conditions and their loved ones:

Therapies for Healing Nervous System Responses to Stress, Trauma, and Perceptions of Threat, Veronique Mead, MD, MA (on my chronic illness and trauma blog)

Improving ABEs Awareness

Despite a large body of evidence from different fields of study, including from individual studies in different diseases, most people with chronic illness as well as health care professionals are not aware of risk factors in early life.

When I was a family doctor I followed women through pregnancy, supported them and their families during labor and birth, and helped them take care of their babies afterwards. I preferred to support women with as few interventions as possible but didn’t have the experience of a midwife or the medical knowledge base to know what to do to avoid interventions as much as I wished. When babies or mothers had complications, I felt there had to be more that could be done for prevention, treatment and recovery. I also wondered about long-term impacts.

This post presents what I’ve learned since leaving medicine and that I wish had been part of my training back then.

It shares some of the research I’ve been integrating for the past 20 years about risk for chronic disease. It also draws from: my 400 page master’s thesis on the role of trauma and somatic psychotherapist in chronic disease; a 3-year training on working with adversity in the prenatal and early development periods; participation in over 300 hours of intense small group settings where I and others have worked with the effects of ABEs in our personal lives; healing the effects of supporting women, families and babies through pregnancy and birth from within our traumatized and often traumatizing medical system; and ongoing work with my chronic illness from these and similar perspectives with other types of adversity. Addressing ABEs has been an important factor that has helped me gradually improve from debilitating chronic fatigue syndrome (ME/CFS), asthma and other symptoms. You can learn more about my story here.

Knowing about ABEs research when I was a doctor would have helped me offer medical care in different, proactive, more empowering ways (for my patients and for myself). I would have had a context to help us all better understand what was happening as well as what to do about it.

ABEs, Like ACEs, Offer Hope

ABEs are about brain plasticity and the possibility of healing.

ABEs are about repair and hope because there is no such thing as perfection in preparing for and giving birth, in being a parent, or in supporting families during their first steps and early years. There is, in addition, much room for improvement in how we practice medicine.

ABEs are about understanding that difficult or missing experiences can happen to anyone and that such experiences are not a sign of failure.

Like ACEs, ABEs are an indication of the potential for reversibility and healing of chronic diseases and other symptoms, even months, years or decades after exposure.

ABEs Can Be Repaired

ABEs find that a mother’s and father’s experiences, emotions and behaviors influence how their baby’s genes, nervous systems, experiences of relationship ,and other capacities develop and function. As a result, parents contribute to the direction and degree of resilience or sensitivity to stress a baby can have for life.

ABEs science explains that parents can actively facilitate their baby’s long-term health through self-awareness and healing of their own ACEs and other adverse life experiences.

Working with learned behaviors and nervous system patterns of survival from early life is a way parents can interrupt and prevent themselves from repeating and reenacting the past with their children (Klaus & Kennell, 1982, Chapter 1, p. 11).

The research also means that children and adults with chronic diseases can modify and support their nervous systems, gene function, immune systems and more by healing their ABEs, ACEs and other adverse life events.

The following presents detailed information in the same order as can be found on the one page fact sheet in the free download.

Risk Comes from Loss of Balance

An important note to keep in mind while learning about ABEs is that effects such as chronic disease, mental illness, and developmental delays are not inevitable

Adverse babyhood events are a normal part of being human. Optimal health is therefore supported through repair rather than perfection. Risk for disease and other effects arises when there are too few nurturing experiences in the face of too many adverse events and when there is no repair.

Repairing disruptions in bonding, healing effects of other adverse events, and fostering feelings of connection are protective. These buffer the effects of adversity and support resilience.

The free download of the fact sheet and checklist includes an example of a magical birth experience that supports optimal health. Most people do not experience all or even most of these events, and having difficult experiences is not a failure or an irrevocable loss. Understanding ABEs offers hope. We are designed to heal. Repair is possible at any age. Look at ABEs from a place of compassion, for they are an inherent part of the human journey.

Free Downloadable Fact Sheet, Checklist & Example of “Magical Birth”

I’ve summarized this post in a free downloadable 1 page ABEs fact sheet with references and accompanying pages. They include:

  • a summary of the evidence
  • a list of chronic diseases known to be increased by ABEs
  • an 11-item checklist to help identify ABEs
  • early warning signs in babies and mothers highlighting the need for ABEs repair
  • tools for prevention and repair that provide hope for adults with chronic illness, mental health conditions and other long-term effects of ABEs
  • tools for parents of children with chronic diseases and other health conditions
  • articles & links for health care professionals

This blog post is a companion to the fact sheet and provides the details.

I envision this becoming a course or multi-day workshop some day. I’ll be speaking on this topic at the Association for Prenatal, Perinatal Psychology and Health (APPPAH) conference in Denver on November 9th, 2019.

Consider this comprehensive post as Adverse Babyhood Experiences and Chronic Illness 101.

The post includes my favorite books and free downloadable journal articles for understanding the science behind the facts. The articles can be used to inform yourself and others, including your doctors and other health care professionals.

I introduce encouraging programs, people and books that are implementing change in prenatal and perinatal practices and list a number of them at the bottom of in the post.

Acknowledgements

I want to say a heartfelt thank you to friends and colleagues for input, enthusiastic support, and vital feedback on the checklist and downloadable forms:

Tony Madrid, PhD is a kindred spirit with a huge heart who generously shares his research and Maternal Infant Bonding Survey (MIBS) with me and everyone else to draw from. I had the honor of meeting him at my first APPPAH (Association for Pre and Perinatal Psychology and Health) conference in 2000 and attending his MIBS training some years later.

Midwife Beth Barbeau, has a sense of embodiment, deep emotional intelligence and loving, skillful support for babies and families that has always inspired me. We’ve been friends since college and this post was a wonderful opportunity to reconnect.

Marc Ringel, MD is an author and fellow family practice physician who I met during obstetrics training in Gallup, New Mexico 25 years ago. He recently retired after 45 years of practice, which included work in rural areas, teaching and hospice care. He has always made me laugh.

Reader Paula DeMasi, PhD is a former economist with whom I’ve shared the excitement of gradual improvement from chronic fatigue syndrome (ME/CFS) using the context of how adversity affects the nervous system, and powerful resources such as Steve Hoskinson, co-founder of Organic Intelligence.

And to my partner, David and all my readers, colleagues and friends who are such an important part of my path, growth, and exploration in this work.

The rest of this post provides the detailed background summarized on the 1 page ABEs fact sheet and accompanying checklist. The overview below is provided in the same order as found on the fact sheet.

I. Research Evidence for Risk

The impact of ABEs on risk for disease builds on research from many different fields of study. These studies help make sense of risk factors that I describe in more detail in the checklist. Studies are abundant and too numerous to cite so I include a select few along with links, books and other resources for additional reading.

The Fetal Origins of Adult Disease (FOAD)

Dr. David Barker’s studies identified that prenatal adversity in the form of psychological or physical stress are risk factors for heart disease, high blood pressure and other symptoms of insulin resistance such as type 2 diabetes and obesity. Stressors vary from the loss of a loved one and marital conflict, to poor nutrition, diabetes and other illnesses in the mother.

Effects of prenatal stressors are independent of lifestyle factors such as smoking, dietary fat, or exercise, even as modifying them can reverse symptoms of adult disease in some people. Effects of prenatal stress are also separate from family history and income levels (Calkins, 2011).

Initial studies in the fetal origins of adult disease were conducted in Europe with over 20,000 subjects in the 1930s and 1940s. Later studies in Asia, North American, Africa, and Australia and Canada’s Project Ice Storm (Turcotte-Tremblay, 2014) have replicated these findings.

Small Birth Size: Low birth weight, such as being small for your birth age or the smaller twin have been linked to risk because they reflect exposures to stress while in the womb. Babies with average birth weight are still at risk if they’ve been exposed to prenatal stressors.

High Birth Weight: Weighing over 10 pounds at birth similarly reflects exposures in the womb, some of which include maternal health conditions such as insulin resistance and diabetes.

Multigenerational Effects: ABEs such as prenatal stress affect birth weight and risk for the same diseases in a mother’s grandchildren. This fact explains how difficult it can be to identify early risk factors if our own birth history seems to have been normal.

Learn More: You can learn more on wikipedia, read or download a review of FOAD research below to give to your doctor and learn more in books by Francis (2012),

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Past trauma triggers flares in all kinds of chronic diseases as can infections, mold, and other exposures. This understanding builds on the cell danger response (CDR) and other science I share on this blog.

Included below are 16 aspects of triggers that play a critical role in chronic disease.

I include highlights about the concept of triggers and flares with excerpts from my most recent discussion with Ameé Quiriconi of One Broken Mom who has rheumatoid arthritis / disease (RA/RD). I also present two examples from my own history with chronic fatigue syndrome (ME/CFS).

Free Downloads

You can download this post below – the form will appear momentarily.

In her excerpts, Ameé describes breakthroughs she’s having from looking at her illness through a lens that understands disease to represent a body stuck in a threat response.

Her insights come from recognizing how trauma triggers flares linked to old attachment wounds.

The process has helped her catch flares very early. In what is especially empowering and exciting, it’s also helping her find ways to decrease their severity and even completely resolve a long-standing flare.

I’ll define triggers, explain flares, and give you examples of different types of trauma that trigger flares below.

This information about triggers also supports Dr. Robert Naviaux’ cell danger response (CDR) research and new paradigm of disease, which proposes that chronic illnesses reflect survival responses and may be more reversible than has been recognized. The points I share on how trauma triggers flares draws from research in traumatic stress (1)McFarlane, A. C. and G. De Girolamo (1996). Chapter 7: The Nature of Traumatic Stressors and the Epidemiology of Posttraumatic Reactions. Traumatic stress: the effects of overwhelming experience on mind, body, and society. B. A. van der Kolk, A. C. McFarlane and L. Weisaeth. New York, Guilford: 129-154, (2)Lawrence-Wood, E., et al. (2015). “Re-experiencing phenomena following a disaster: The long-term predictive role of intrusion symptoms in the development of post-trauma depression and anxiety.” Journal of Affective Disorders 190: 278-281, (3)Yehuda, R., et al. (2015). “Post-traumatic stress disorder.” Nature Reviews Disease Primers October: 150-157, (4)McFarlane, A. C., et al. (2002). “Biologic models of traumatic memories and post-traumatic stress disorder. The role of neural networks.” Psychiatric Clinics of North America 25(2): 253-270, (5)Scaer, R. (2005). The Trauma Spectrum: Hidden wounds and human resiliency. New York, W.W. Norton, (6)Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic, (7)Levine, P. (1997). Waking the Tiger: Healing Trauma. Berkeley, North Atlantic Books. The information will help you get a sense of why it’s important to consider trauma triggers. I’ll write more on how to do this in a future post.

This post fills out some of the important points Ameé makes about her triggers and flares, which was just a part of our full conversation about the role of the cell danger response and adversity as important risk factors for chronic disease. You can find us on youtube and as a podcast on Ameé’s site.

Introduction

Triggers often link to past adversity and unresolved trauma from difficult experiences or overwhelming exposures.

Triggers are not “psychological” or “all in your head.”

Triggers – and the flares they can cause – are in our nervous systems and cell danger responses.

The links between triggers and flares are real. In addition, they hold powerful clues that can help us understand symptoms and begin to decrease and even prevent them.

1.What are triggers? They are reminders of past events

Triggers are a well-known characteristic of trauma. They are reminders of past experiences that have been intense or overwhelming enough that even subtle reminders can stimulate symptoms months, years or decades later. Risk factors for triggers include events that have evoked some degree of helplessness to escape, successfully fight our way through or to somehow overcome threat.

An example comes from stories of veterans who have flashbacks when they hear a helicopter, even though they are home and safe. A veteran might also fall into an automatic defensive crouch on hearing a car backfire, which sounds like gunfire.

These responses in the present moment are based on triggers from unresolved issues the past.

2. What are flares in chronic disease?

Flares refer to increases in old symptoms or onset of new ones in people living with chronic disease. Flares are also known as flare-ups, exacerbations, spikes, crashes and by all kinds of other terms.

The first point I made above describes symptoms flares of PTSD in veterans after exposure to certain triggers.

In chronic illness, flares are seen with periods of temporary or gradual worsening that can look like the following:

  • blood sugar highs or lows in diabetes
  • periods of increased exhaustion, brain fog or immune dysfunction in chronic fatigue syndrome (ME/CFS)
  • migraines and other pain that seems to come out of the blue
  • redness, swelling, painful joints and other symptoms in rheumatoid disease
  • cycles of severe diarrhea or constipation and pain in Crohn’s and Ulcerative Colitis (inflammatory bowel disease) or irritable bowel syndrome (IBS)
  • new symptoms or worsening of old ones in MS, fibromyalgia
  • asthma attacks
  • blood pressure spikes or drops in POTS and other diseases
  • cycles of heart arrhythmias such as atrial fibrillation
  • periods of depression or anxiety
  • brain fog, disconnection or feeling numb
  • greater sensitivity to infections, mold and other environmental stressors
3. Triggers are often unrecognized

Triggers frequently lie outside of our memory and awareness. This means that symptoms and flares can seem to come out of the blue.

Psychiatrist Daniel Siegel is a leader on how early relationships influence development and health.

In his book, Parenting From the Inside Out, he describes how confused he was when he first noticed that his infant son’s crying triggered a sense of panic in him.

I used to feel a strange sensation when my son was an infant and he would be inconsolable in his crying. I was surprised at the panic that would come over me as I became filled with a sense of dread and terror. Instead of being a calm center of patience and insight, I became fearful and impatient.

Being curious and suspicious that we might be experiencing a trigger is helpful and sometimes even necessary to uncover their source.

Because Siegel wondered whether he was experiencing a trigger, he looked for images, feelings, sensations or impulses that might identify a source of his symptoms.

It was some time before he had an insight and the source of the panic surfaced.

It had shown up as a flashback to his medical training from years before, when he had cared for children who were sick, often terrified, and crying. As their doctor, he had felt helpless when he had to perform procedures that scared them or that caused pain. This is part of what can be so traumatizing in medical training (and similar to experiences I had as well). Like most physicians-in-training, Siegel had also had too little time and support himself to process what was happening or figure out how to do it differently:

My empathic connection with the children’s terror in the hospital was overwhelming. The year was so intense, the work so demanding, the number of patients so high, the turnover so quick, and the illnesses so severe that my coping skills were put on high alert.

You may recognize that this is also a description of trauma and how the cell danger response gets stuck to lead to symptoms and disease.

Dr. Siegel explains that he worked through this trigger and his response to his son’s crying in part by recognizing, understanding and being with his fears, even though it was difficult. It also helped him grow and heal so that his trauma didn’t interfere with this aspect of being a parent.

Fortunately, through painful self-reflection, I was able to see this as an unresolved issue in myself and not as a deficit in my son.

You can learn more about triggers and how to work with them in Dan Siegel’s book, Parenting From the Inside Out and the Mindsight institute he founded to support healing and integration in the nervous system. His work with triggers helps with parenting as well as the ability to more fully relate to yourself and to others. It’s also a example of how this kind of work can help us with chronic disease.

I’ll write more about working with triggers in a future post. For now, I want to say that both Ameé and I needed to first become curious about whether trauma triggered our flares so that we could then actively begin to look for them. It took both of us a year to recognize our first triggers. As you’ll see, it is worth it and a huge component of healing. Ameé describes her trigger and the improvement in her flare in excerpts that follow.

4. Triggers come in all shapes & sizes

As we saw with the examples I’ve mentioned above, symptoms often arise following reminders of past exposures, adversities or traumas that are unresolved and that are associated with some degree of helplessness or overwhelm.

Triggers can include:

  • hearing reminders of traumatic events, such as helicopters for veterans and crying for Siegel
  • going to a hospital where you or a loved one spent time for a serious illness or stressful procedure, even if you’re just getting your blood drawn
  • visiting family who were psychologically abusive to you in the past
  • smelling antiseptics you had for surgery, for care after an accident or for your chronic disease, or because you once worked in a hospital where you witnessed trauma, loss or death
  • seeing a doctor (or other person in a position of relative power over you) who doesn’t believe you or who dismisses your symptoms because nothing is visible and your labs are normal
  • interacting with someone who feels invasive, rude, cruel or who is focused on their own needs at the expense of yours

Symptoms and triggers are unique for each of us based on our histories. They can arise from ordinary, non-threatening sights or sounds, people, places or things.

Soldiers who crouch or have flashbacks are experiencing appropriate symptoms of self-protection and defense but to situations that are no longer happening and that are no longer dangerous.

This is how unresolved trauma can affect us long after the event has passed.

As I describe in this post about the cell danger response, exposures to various degrees of overwhelm or threat can evoke threat responses that get stuck and lead to chronic diseases of all kinds.

Ameé’s attachment trauma triggers RA flares

29:27 to 29:43

How complex PTSD triggers flares in chronic illness (example with RA) - YouTube

5.Triggers arise from unresolved trauma

In the clip above, Ameé describes one of the most insidious, underrecognized and perhaps most common types of triggers, which stems from early attachment wounds that arose when growing up in our families.

These are also known as attachment or relationship trauma, complex trauma or complex PTSD. I refer to them as adverse childhood relationship experiences (ACREs) and invisible ACEs (adverse childhood experiences) because their effects go well beyond PTSD to include flares in chronic disease. I also use the term ACREs to build on ACEs research, which explains how abuse and neglect include our earliest relationships to affect risk for chronic disease.

Ameé realized when looking for triggers that her RA flares up when she interacts with people who act like the adults she lived with in her childhood. Interactions with such folks trigger an overwhelmed fight response that was repeatedly squashed when she was a child.

In our conversation, Ameé relates that she was unable to tell the truth without being scapegoated by some of her family members throughout her childhood. She did not feel heard and was unable to set boundaries.

Boundaries are a form of self protection using the social nervous system’s verbal self-protective mechanisms to say “NO.”

When this “no” gets overridden and there is payback, it can become threatening to express yourself, your views, your needs or your wants. This is life-threatening at a level that we don’t usually acknowledge or recognize in our culture. It’s not necessarily because parents and other family members don’t love us, but it stems from their own trauma and difficulty connecting in nurturing ways. In other words, these kinds of behaviors and adversity have an impact even if the members of your family love you.

When a child can’t tell the truth as they see it without getting shamed, blamed, judged or otherwise criticized, their nervous systems can turn to the next natural form of defense. This can be a fight response that has a stronger push of “Hear Me!” and “No!”

In Ameé’s case, this fight response wasn’t effective either. As a result, her ability to defend herself got overwhelmed.

In such cases, our bodies can’t succeed at being heard and seen, which is necessary for a child to feel that she is actually real and alive, wanted, loved and lovable.

The nervous system’s last remaining alternative in such situations is to immobilize or freeze.

This is one way that a cell danger response (CDR) can get stuck to drive disease later in life.

6. Events that trigger flares may not be dangerous or stressful

Triggers may be stressful, but they often aren’t threatening in the ways they might have been in the past. Triggers are often not dangerous in and of themselves in the present day.

The example Ameé gives is about a stressful encounter with her ex who she is in the process of divorcing. Her trigger is not actually a life-threatening event as it might have been when she experienced it repeatedly throughout her childhood.

As another example, the helicopter that monitors traffic for the drive-time radio show is not the kind of helicopter that was present for a veteran when they were fighting in a war. Hearing it can, however, trigger the same response of fight, flight or freeze as it did in the past.

The smell of antiseptics is also not generally a threat in and of itself. If symptoms or flares arise from smelling them, however, it suggests that there is a trigger from prior unresolved trauma, such as from a medical procedure or event that happened in a hospital or medical setting.

7. Symptoms are intelligent responses that have gotten stuck

We all have natural responses to threat. Responses such as fight, flight or freeze, and the cell danger response are designed to resolve when the threat has gone.

As I’ve mentioned in recent posts, responses of fight, flight and freeze cause problems when they get stuck and are unable to resolve.

Symptoms that arise from triggers are intelligent expressions of fight, flight, or freeze that are stuck in these modes of self protection or self expression.

They can also make us feel as though we are back in the past, reliving the moment.

Symptoms that get triggered can replicate the actions that did not resolve the threatening situation in the past. In Ameé’s case, she realizes that the flares in her wrists are a symptom of a fight response that was long thwarted as a child.

What she’s intrigued by is how they feel just like her fight response of wanting to punch someone and how they act now as an early detection system. I’ll describe this characteristic in more detail a little further down.

8. Symptoms are stimulated by triggers

One indication of a symptom that has been triggered is that it tends to be out of proportion or even irrelevant to the situation in the present.

A soldier who crouches on hearing a car backfire is acting as though she or he is still fighting a war and is back in another place and time.

Feeling threatened when passing the scene of a previous accident is an indication that something remains unresolved from that event since the location itself is not a threat.

Feeling panic when his son cries is Dan’s indication that something is amiss.

Ameé’s impulse of wanting to punch someone reflects the extent of life-threat her body felt as a child when she couldn’t get heard or was crushed for trying to express herself. Wanting to physically fight is the result of an old response and, as she clearly recognizes, it is not the best solution to the issue she is facing today.

9. Triggers can be identified

In our conversation, Ameé describes that she learned to identify her triggers by watching for precursors to her flares and by paying attention to her emotions and to the somatic experience of sensations in her body.

What Ameé caught over a period of paying close attention, was the very first indicator that precedes a flare.

For Ameé, it’s a sensation of tightness in her chest, which she refers to as her “Early Warning Detection System.”

This is a really helpful name because it describes just what it does – gives us space and time to make new choices in the present instead of falling into old patterns that don’t serve us.

These early warning signs are something we can all learn to identify with time when we start looking.

1:08:04 1:08:43

Triggers and Flares in Chronic Disease are Early Warning Detection Systems - YouTube

10. Flares often reflect symptoms of fight, flight and..
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

I’ve described how chronic fatigue syndrome (ME/CFS) is a disease driven by a cell danger response (CDR) and a nervous system caught in freeze in Part 1. This second post describes how the CDR gets stuck. I’ve developed surveys for anyone with ME/CFS to help get a better sense of risk factors based on the research. You can fill them out below or in the companion post that contains only the surveys. The science I present here provides a context for the third and upcoming post on how to approach treatment.

Note: This post is long enough to constitute an ecourse (or a book), so you can download it in a free kindle or pdf (you will find the surveys in the appendix of the PDF version).  I want to lay out this information in one place so that the ME/CFS community can understand the series of arguments and science that support and further clarify Naviaux’ emerging new paradigm of disease. It also explains why it’s not psychological.

Free Downloads

You can download this post or part I below – the forms will appear momentarily.

The view of ME/CFS as a metabolic state of freeze is based on a new disease paradigm presented by Robert Naviaux, M.D, Ph.D, Professor of Medicine, Pediatrics and Pathology, who is also a geneticist and virologist conducting mitochondrial research in his Mitochondrial and Metabolic Disease Lab at UC San Diego.

In Part I, I introduced Dr. Naviaux’ study of patients with ME/CFS finding a body-wide cell danger response that has gotten stuck in a metabolic state of freeze. I integrated parallel research about how the nervous system responds to threat, drawing from polyvagal theory developed by Dr. Stephen Porges at the University of North Carolina at Chapel Hill.

Porges’ view of the nervous system describes how a system-wide CDR is regulated by the parasympathetic branch of the nervous system (the dorsal vagal complex or “DVC”), which operates the freeze-based survival response. In such physiology, the sympathetic branch that promotes fight or flight cannot inhibit, overcome or reverse the hibernation-like metabolism of immobility as it is designed to do. Neither can the second parasympathetic branch of the nervous system, called the social nervous system (ventral vagal complex or “VVC”).

I summarize Naviaux’ new paradigm of disease and ME/CFS in this way:

ME/CFS is a hypometabolic state driven by a system-wide cell danger response (CDR). The CDR involves one or more survival oriented biochemical pathways that have been initiated, strengthened and prolonged by the additive effects of environmental stressors such as infections, chemicals, trauma and missing experiences. The autonomic nervous system drives the CDR of freeze to cause disease. When the social nervous system regains dominance it can inhibit fight, flight and freeze so our bodies can heal, rest, digest and play when threat is no longer present. The new paradigm of disease explains how the disease process may therefore be reversible.

Dr. Naviaux’ study also identified 5 categories of stressors that trigger the onset of ME/CFS:

  1. Biological (infections from viruses, bacteria, parasites; exposure to mold, fungus etc)
  2. Chemicals (pesticides, fire retardants, etc)
  3. Psychological trauma (loss of a loved one, separation or divorce, an accident, …)
  4. Physical trauma (accident, surgery, breaking a bone, a fall, …)
  5. Unknown

While biological factors were more common, there was no single agent or type of infection that was more common for anyone and many of the patients in their study had experienced more than one of these stressors before the onset of their ME/CFS.

***Survey 1: Adverse Pre-Onset Experiences (APOEs) in ME/CFS

This survey gives an idea of the kinds and number of adverse exposures that contributed to onset of ME/CFS. It includes a score of up to 15 for how many different triggers you may have experienced in the year before onset. I refer to these as adverse pre-onset experiences (APOEs).

Onset triggers are events that occurred in the time period before you became sick. This survey is different from events that trigger flares after onset of ME/CFS.

 If you’d like to add an onset trigger that is not mentioned, you can check the box(es) for other at the bottom of the questionnaire. There is one point for each kind of exposure.

There is a separate survey specifically about infections in question 7, section 7 of this post (under Frequently Asked Questions).

Note: in the PDF version of this post you will find the survey in the appendix

Add up the exposures that played a role in your life (one point for each type and one point for other exposures). This is your ME/CFS Adverse Pre-Onset Score (APOE).

ME/CFS Adverse Pre-Onset Experiences (APOEs)





If you are human, leave this field blank.
If you have or had ME/CFS, check all the boxes that applied to you in the year before the onset of your ME/CFS:

1. Infection: Infection (viral, bacterial, parasitic, …) (a biological stressor)
2. Mold: Mold or fungus (biological)
3. Vaccine: Vaccine (biological)
4. Pesticide: Pesticide or other chemical
5. Medication: Medication or other ingested substance (chemical)
6. Family Stressor: Family-related psychological stressor or trauma (illness, death, divorce, etc)
7. Work Stressor: Work-related psychological stressor or trauma (long hours, bully of a boss, witness to trauma or death such as a medical professional, journalist, police etc)
8. Community: Community tragedy or related stressor (violence, death, local or national tragedy such as 9/11, natural disaster etc)
9. Discrimination: Discrimination due to race, religion, ability, sexual orientation etc (psychological stressor)
10. Physical stress: Physical stress or trauma (long work hours, physical effort of caretaking a loved one, an especially taxing work schedule; injury, fractures, concussions, falls…)
11. Medical: Medically-related physical stress or trauma such as surgery, invasive medical procedure)
12. Pregnancy
13. Other: Are there any adverse experiences in your life that should be added to the above list of triggers? If yes check one box for each event and check the last box below to name or list event(s)
14. Other: Are there any adverse experiences in your life that should be added to the above list of triggers? If yes check one box for each event and check the last box below to name or list event(s)
15. Other Are there any adverse experiences in your life that should be added to the above list? If yes check one box for each event and check the last box below to name or list event(s)
16. No known trigger(s)
Select this box to name any other onset triggers you experiencedSelect this box to name any other onset triggers you experienced


Submit to Update & See Graphs

Introduction

I start this post with a condensed summary of Naviaux’ paradigm which I presented in detail in part I.

I then introduce two mechanisms that can initiate and strengthen the cell danger response pathway that leads our bodies to react to threat with a freeze response and to then get reset or stuck in this mode.

A surprising amount of research in biology, brain and child development, physiology, epigenetics, adverse childhood experiences (ACEs), adverse babyhood experiences (ABEs), and in autoimmune and other chronic diseases help explain how the CDR gets stuck and support Naviaux’ new paradigm of disease. They also help make sense of it for those of us who aren’t cell biologists, geneticists and virologists. I introduce these scientific studies below.

Some of the research draws from the field of traumatic stress, which is a science that has evolved to include neuroscience and genetic studies. The belief that all effects of trauma are psychological is out of date and has yet to be taught in medical school.

So if you’ve ever been told that ME/CFS is in your head or that trauma means it’s not real, or due to a personality flaw, or that you are somehow at fault – know that this is false. We are on the cusp of a new way of making sense of disease. The new science is changing medicine, leading to new guidelines at the American Academy of Pediatrics (AAP) and also beginning to shift some of the guidelines of the American College of Obstetricians and Gynecologists (ACOG) for delivery and during the first weeks after giving birth. The research is introducing possibilities for improvement, prevention and even healing in ways we’ve never thought of before.

Topics in this article include a look at what prolongs the CDR to increase risk for disease, examples of environmental stressors that can initiate or trigger disease onset, and characteristics of cell danger responses that begin to address many important questions in ME/CFS and other diseases. I have also included 4 surveys to specifically evaluate these risk factors in people, like me, who have or had ME/CFS.

I. Summary of ME/CFS as a Freeze State

The state of freeze is a built-in evolutionary defense mechanism that is expressed in all animals, including humans. It is not a conscious choice, a psychological ploy, or a sign of weakness or laziness. It is expressed by cells, the nervous and immune system, in other tissues and physiology, and through many other pathways.

Dr. Robert Naviaux’ research team came to four important conclusions in their study of ME/CFS:

  1. The cell danger response (CDR) that drives symptoms in ME/CFS reflects a physiological state of hibernation aka “freeze”
  2. ME/CFS is a state of low metabolic dysfunction and is not psychological
  3. ME/CFS is triggered by 5 broad categories of exposures: infections, chemicals, psychological trauma, physical trauma and an unknown group
  4. These different exposures all trigger the same cell danger response pathway
A State of Hibernation that’s Not Psychological

Naviaux’ research in the cell danger response (2014, 2016, 20172018, Q&A 2016), which cites over 350 articles, states that cell danger responses lead to ME/CFS and a hundred other diseases:

The metabolic state of an individual at the time of illness is produced by both current conditions, age, and the aggregate history, timing, and magnitude of exposures to physical and emotional stress, trauma, diet, exercise, infections, and the microbiome recorded as metabolic memory (2016, p. 1).

Porges’ polyvagal theory and research in traumatic stress and other areas support and elaborate on these findings about the role of age, accumulated history, current conditions and triggers, as well as the timing and intensity of exposures. They explain similar patterns of response to threat at the nervous system level as Naviaux has described at the mitochondrial and cellular level.

In ME/CFS, the CDR shifts from a temporary, local, natural, mitochondrial cellular defensive response to a prolonged, system-wide function that does not switch off as it is designed to do in health. Instead, it actively and purposefully keeps the organism in a death-like state of shut-down as a means of surviving until an overwhelming threat goes away.

When human bodies, like c. elegans, shift to the dorsal vagal states of relative immobilization and freeze to out wait a threat they can feel:

  • exhausted and “death-like” with low heart rate, blood pressure or temperature
  • jelly-limbed and unable to move or move with effort and fatigue
  • dissociated and fuzzy-brained
  • emotionally depressed or numb
  • faint or weak
  • unable to talk
  • unable to digest
  • more susceptible to infections
  • and much more

Common features among the 5 types of exposures that trigger ME/CFS appear to be that they:

  • are perceived as life-threatening just as low oxygen, low food, excessive heat or cold are life-threatening and trigger dauer in c. elegans
  • cannot be overcome through parasympathetic social nervous system functions of communication, social interaction, negotiation
  • cannot be escaped or resolved via sympathetic nervous system actions of fight flight
  • elicit survival functions of parasympathetic dorsal vagal freeze responses
  • are intelligent, physiological survival mechanisms that alter mitochondria, metabolism, cellular activity, immune function, nervous system patterns of regulation and many other physiological processes
  • reflect a coordinated, purposeful shift in physiology to promote survival even at the cost of potential short or long-term losses of function (such as ME/CFS)

The research builds on Naviaux theory to explain that these triggers are not the cause of ME/CFS but the last in a series of exposures that have slowly been strengthening the CDR of freeze over years and often, over decades. Here’s how.

II. Introduction to The New Paradigm

CDR theory presents a completely new way of looking at causes of ME/CFS and 100 other diseases (2018).

Emerging evidence shows that most chronic illness is caused by the biological reaction to an injury, and not the initial injury, or the agent of injury itself. For example, melanoma can be caused by sun exposure that occurred decades earlier, and posttraumatic stress disorder (PTSD) can occur months or years after a bullet wound has healed (emphasis added, Naviaux, 2018, p. 1).

The cell danger response paradigm looks at disease in a fresh way based on the latest research:

This study … reframes the pathophysiology of chronic illness as the result of metabolic signaling abnormalities that block healing and cause the normal stages of the cell danger response (CDR) to persist abnormally.

Reframing the pathogenesis of chronic illness in this way, as a systems problem that maintains disease, rather than focusing on remote trigger(s) that caused the initial injury, permits new research to focus on novel signaling therapies to unblock the healing cycle, and restore health when other approaches have failed (Naviaux, 2018, p. 1).

So what causes such an extreme biological reaction to injury or threat? What makes our cells and nervous systems so twitchy that they trigger ME/CFS after a sometimes mild infection, or a chemical that does not seem to be problematic for other people, or to what seems like a relatively non-life threatening stressor such as surgery or a fender bender or breaking a bone?

The rest of this post will begin to address this and the following questions:

  1. How do we know if this paradigm is accurate?
  2. Does other research support this view?
  3. How does the CDR get stuck in freeze?
  4. What kinds of exposures can cause ME/CFS?
  5. Why does ME/CFS sometimes start immediately and other times months or years after a stressful or traumatic event?
  6. What if there is no current threat in a person’s environment yet they still have ME/CFS?
  7. What about infections?
  8. What about toxins?
  9. Why do some people develop ME/CFS after exposure to certain environmental stressors when others exposed to the same events and triggers do not?
  10. How can a CDR cause so many different diseases?
  11. What does this mean for treatment?

Naviaux looks at disease as a systems problem occurring at the cellular level. The following sections introduce other bodies of research that echo this perspective to address questions #1 & #2. They also expand on question #3, how the CDR gets stuck or prolonged to cause disease. Addressing this will begin to answer the remaining questions.

What Prolongs the Cell Danger Response?

Cell danger responses can occur in different organs and tissues without affecting the whole.

It is only when CDRs become systemic and widespread for long enough periods of time that disease occurs.

There are at least two important mechanisms that can prolong the CDR: exposures to threat, and missing experiences.

The first mechanism that can prolong the CDR involves the presence of threat significant enough to trigger an immobilization or freeze response. The second is the absence of early experiences needed to develop a fully engaged social nervous system that is strong enough to inhibit the freeze response and hypersensitivity to stress.

III. Mechanism 1: How Adversity Prolongs the CDR

In general, exposures to stress lead to threat responses in different organ systems, such as increases in heart rate when feeling afraid, increases in breathing when fleeing a bear, immune reactions in cells that isolate a virus or bacteria, or diarrhea and other changes in gut function that cope with an invading microbe. When the stressors go away, these cell danger responses stop. In the normal cycle of healing, the CDR turns off when threat resolves.

When the CDR gets stuck, the healing cycle is interrupted and the cell danger response becomes a prolonged system-wide..

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

This chronic fatigue syndrome (ME/CFS) questionnaire is a companion to the series about Dr. Robert Naviaux’ research on the cell danger response (CDR) and how ME/CFS represents a metabolic state of freeze. This post contains 4 ME/CFS surveys.

I’ve developed these surveys based on studies about risk factors for other diseases.

Your responses will give you a context for making sense of your symptoms from Naviaux’ emerging new paradigm of disease. They will also help my own informal research.

These ME/CFS surveys are also in Part II ME/CFS and The Cell Danger Response, which presents the science on how the CDR gets prolonged to lead to disease. You can learn more about the research for each of the surveys in that blog post.

When you fill out surveys on this page, your answers will also be added to the same survey in the other blog post.

You will see graphs of all the responses, including yours, after you click the submit button.

ME/CFS Surveys 1: Adverse Pre-Onset Experiences (APOEs)

Cell danger signaling research explains that chronic fatigue syndrome reflects a body caught in a metabolic state. This very real, physiological state is similar to hibernation or freeze.

ME/CFS is affected by nervous system perceptions of threat following exposures to environmental stressors such as infections, chemicals, as well as physical and psychological trauma. It is not in your head.

This survey gives an idea of the kinds and number of adverse exposures that contributed to your onset of ME/CFS. It includes a score of up to 15 for how many different triggers you may have experienced in the year before onset.

Onset triggers are events that occurred in the time period before you became sick. This survey is different from events that trigger flares after onset of ME/CFS.

 If you’d like to add an onset trigger that is not mentioned, you can check the box(es) for other at the bottom of the questionnaire.

Add up the exposures that played a role in your life (one point for each type and one point for-other exposures). This is your ME/CFS Adverse Pre-Onset Score (APOE).

ME/CFS Adverse Pre-Onset Experiences (APOEs)





If you are human, leave this field blank.
If you have or had ME/CFS, check all the boxes that applied to you in the year before the onset of your ME/CFS:

1. Infection: Infection (viral, bacterial, parasitic, …) (a biological stressor)
2. Mold: Mold or fungus (biological)
3. Vaccine: Vaccine (biological)
4. Pesticide: Pesticide or other chemical
5. Medication: Medication or other ingested substance (chemical)
6. Family Stressor: Family-related psychological stressor or trauma (illness, death, divorce, etc)
7. Work Stressor: Work-related psychological stressor or trauma (long hours, bully of a boss, witness to trauma or death such as a medical professional, journalist, police etc)
8. Community: Community tragedy or related stressor (violence, death, local or national tragedy such as 9/11, natural disaster etc)
9. Discrimination: Discrimination due to race, religion, ability, sexual orientation etc (psychological stressor)
10. Physical stress: Physical stress or trauma (long work hours, physical effort of caretaking a loved one, an especially taxing work schedule; injury, fractures, concussions, falls…)
11. Medical: Medically-related physical stress or trauma such as surgery, invasive medical procedure)
12. Pregnancy
13. Other: Are there any adverse experiences in your life that should be added to the above list of triggers? If yes check one box for each event and check the last box below to name or list event(s)
14. Other: Are there any adverse experiences in your life that should be added to the above list of triggers? If yes check one box for each event and check the last box below to name or list event(s)
15. Other Are there any adverse experiences in your life that should be added to the above list? If yes check one box for each event and check the last box below to name or list event(s)
16. No known trigger(s)
Select this box to name any other onset triggers you experiencedSelect this box to name any other onset triggers you experienced


Submit to Update & See Graphs

ME/CFS Surveys 2: Adverse Babyhood Experiences (ABEs) 1.0

The new understanding of disease understands that life experiences interact with genes to influence gene function.

This means that life experiences and other environmental exposures such as infections and toxins play an important and under-recognized role in risk for autoimmune and over 100 other diseases.

These 30+ questions about adverse babyhood experiences (ABEs) are covered on three pages. They do not include all possible adverse experiences. 

You will see your score on the third page and a set of graphs after you click submit.

Add 1 point for each adverse babyhood experience (ABE) that applies to you.  Add 1 point for each additional event not listed, which you can add at the end of the survey under “other.” This is your ABE score.

ME/CFS & Adverse Babyhood Experiences (ABEs) 1.0





If you are human, leave this field blank.
If you have or had ME/CFS, check all ABEs that apply to you (Page 1 of 3):

1. Mother Loss:Your mother had a miscarriage, stillbirth or lost another loved one

 at any time beginning in the year before you were conceived until your 3rd birthday
2. Mother Physical Illness:Your mother had a serious infection or other physical illness at any time beginning in the year before you were conceived until your 3rd birthday


3. Mother Mental Illness:Your mother had serious depression or other mental illness at any time beginning in the year before you were conceived until your 3rd birthday


4. Mother Drugs:Your mother took a lot of illegal drugs at any time beginning in the year before you were conceived until your 3rd birthday


5. Mother Alcohol:Your mother drank excessively at any time beginning in the year before you were conceived until your 3rd birthday


6. Mother Low Support:Your mother had low support (moved, difficult relationship with your dad, your dad wasn’t involved, family disapproved etc) at any time beginning in the year before you were conceived until your 3rd birthday 


7. Mother Abused: Your mother was verbally, physically, or sexually abused or assaulted at any time beginning in the year before you were conceived until your 3rd birthday


8. IVF+: You were conceived through in vitro fertilization or artificial insemination
9. Conception:There were difficulties or adversities around your conception or getting pregnant other than IVF or artificial insemination, such as infertility, a long period of trying to get pregnant, rape …
10. Procedure: You or your mother experienced an invasive medical procedure during pregnancy (amniocentesis, surgery, …)





Next Page of ABEs Survey

ME/CFS Surveys 3: Expanded Adverse Childhood Experiences (ACEs+) 1.0

I’ve created this expanded version of the original ACE survey to provide a better sense of the types of experiences that have been found to affect risk for chronic diseases. These are likely also risk factors for ME/CFS.

These 30+ ACEs+ questions are covered in three pages. As with the original ACE survey, they do not include all possible adverse childhood experiences. They are designed to give you an idea of what constitutes adversity that can increase risk for chronic disease and other health problems. You can add other events not included in the survey on the third page. 

You will see your score on the last page and a set of graphs after you click submit.

Add up the exposures that played a role in your life (one point for each type and one point for other adverse exposures you may add at the end). This is your ACE+ score.

ME/CFS & Adverse Childhood Experiences Plus (ACEs+) 1.0





If you are human, leave this field blank.
If you have or had ME/CFS check all the boxes that answer the question beginning, “Before your 18th birthday (Page 1 of 3):

1. Lost Parent: You lost a parent for any reason (separation, divorce, death, deportation, jail…)

2. Lost Other: You lost a sibling, grandparent or other loved one other than a parent for any reason (stillbirth, institutionalization, death…)

3. Family Illness: A parent, other primary caregiver or sibling had a serious physical illness or was in a hospital for a serious illness or chronic illness

4. Mental Illness in Family: A parent, other primary caregiver or member of the household was ever depressed or mentally ill, or attempted suicide; Or was in a hospital for mental illness

5. You were sick: You had a serious illness

6. Medical: You had surgery, were hospitalized or had an invasive or scary medical procedure
7. Unsafe: You felt unsafe because of your race, religion, sexual orientation, abilities, neighborhood, beliefs etc
8. Abuse Physical: A parent, sibling or other member of the household often or very often…pushed, grabbed, slapped, or threw something at you; or ever hit you so hard that you had marks or were injured or abused you physically in some other way
9. Abuse Sexual: A parent, sibling or other member of the household touched or fondled you or had you touch their body in a sexual way; or attempted or actually had oral, anal, or vaginal intercourse with you
 or abused you sexually in some other way
10. Abuse Psychological: A parent, sibling or other member of the household often or very often…swore at you, insulted you, put you down, or humiliated you; or acted in a way that made you afraid that you might be physically hurt; or abused you psychologically in some other way





Next Page of ACEs+ Survey

ME/CFS Surveys 4: When ME/CFS is Triggered by Infection 1.0

I’ve created this survey to get a sense of whether there are differences in histories of people whose ME/CFS is triggered by infections and those whose disease is triggered by something else (or by unknown triggers).

* Please take the survey even if your ME/CFS was not triggered by an infection. This will help identify potential differences.

You will see graphs of all the responses after you click submit.

ME/CFS: Infection Onset Triggers Survey





If you are human, leave this field blank.
Did an infection trigger the onset of your ME/CFS?

Yes
No
I’m not sure







Next

Why Does it Matter?

Research in epigenetics, brain development, embryology, brain plasticity support a new paradigm that suggests symptoms of chronic diseases, including ME/CFS may be more reversible than we have realized. This does not mean this or other diseases are psychological. It’s because our experiences get imbedded in our bodies to affect how genes function. This process, known as epigenetics, can be reversible.

See the list of tools at the bottom of Part II on ME/CFS and How the CDR Gets Stuck.

Part III will talk about how new approaches for working with symptoms.

Free Surveys Download

Want to take the surveys on your own time? Includes all 4 surveys.

The form will appear momentarily.

Free Posts on ME/CFS and the Cell Danger Response Free Downloads

You can download this post or part I below – the forms will appear momentarily.

Related Posts

I. ME/CFS and Freeze: A Metabolic State of Hibernation That is Not in Your Head

IIA. ME/CFS and The Cell Danger Response: How the CDR Gets Stuck in Freeze (Surveys)

The Cell Danger Response: The New Disease Paradigm (Diabetes, Metabolic Syndrome, ME/CFS and Beyond)

The post IIB. ME/CFS Surveys (The Cell Danger Response and Hibernation Series) appeared first on Chronic Illness Trauma Studies.

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Is there a connection between rheumatoid arthritis and trauma? Ameé Quicironi, whose symptoms of rheumatoid arthritis first started in 2013, believes so. In this interview we did for her podcast at One Broken Mom, we talk about the science showing how adversity is a risk factor for rheumatoid disease and many other chronic illnesses. We also discuss how it’s not psychological.

Listen to the Full 1 Hour Interview

at One Broken Mom

Listen to the Podcast

Interview Highlights

Ameé starts the podcast by describing the onset of her rheumatoid arthritis / rheumatoid disease (RA/RD).

She developed excruciating shoulder pain in 2013 that would come on for a few days that would wake her at night and fail to resolve with anything she tried. It would then disappear completely before returning the following month. She thought it was due to an injury from lifting heavy tiles by herself. When she developed wrist pain later that year after her husband experienced a terrifying accident, they thought it was some kind of sympathy symptom for his own injuries.

Ameé explains how alone she felt when her partner, friends and doctors didn’t get it.  She mentions how depressing it was after diagnosis when the cause was unknown and treatments all carried significant risks.

When she began to notice that stress and emotions were triggers for her flare-ups, she started researching online and began to connect the dots. She began to realize that stress and old attachment traumas may have affected her risk of getting so sick.

In this interview, we talk about the science showing how life experiences interact with our genes to increase risk for autoimmune and other diseases. We touch on research about adverse childhood experiences (ACEs), epigenetics, and the cell danger response. We also look at how the effects of adversity and trauma are not psychological.

Listen to the full interview on her website in episode 1.27 “Childhood Trauma and Our Health.” You can also get snippets of our conversation in the excerpts below.

You can learn more about the science and download free pdfs at the bottom of this post. See Kelly Young’s blog Rheumatoid Arthritis Warrior for a superb resource on RA/RD.

Addressing Trauma can Help Symptoms and Flares

In this segment, Ameé describes how a 2-year-long flare of wrist pain resolved over night after a date.

It wasn’t because her she had started “thinking positive.” It wasn’t because RA/RD is psychological.

The process briefly described in this segment included mindful, nonjudging self-awareness of the fact that, for her, connection with others can come with a quality of threat and rejection. Being aware of this process in herself is one of the ways she supported her nervous system to shift its perception, and to then also shift a chronic symptom of very real inflammation and joint pain.

The science of the cell danger response and epigenetics both help explain how and why such a rapid shift can happen, even with a physiological process that is causing changes or damage to tissues and cell function. You can learn more about how to work with symptoms in similar ways in therapies for healing nervous system perceptions of threat.

It’s a Nervous System Issue, not a Psychological Issue

Trauma and adverse experiences are risk factors for RA/RD and other autoimmune diseases because life events interact with our genes to shape health.

These effects of trauma are not psychological.

Our cells, tissues and nervous systems determine how to orient to the world according to whether they feel safety and support or threat.

This perspective gets imbedded in our biology by molecules that attach to our genes to guide how they should function. This process responds differently in safety than in threat. It is called epigenetics, because these molecules attach to the surface (“epi”) of genes without changing the underlying structure of our DNA. We talk about epigenetics in a little more detail in the full podcast (episode 1.27).

Rheumatoid Arthritis / Disease: A Cell Danger Response to Threat

Research is beginning to show that chronic diseases such as RA/RD arise when our bodies get stuck in states of fight, flight or freeze and are unable to recover as they are designed to do.

Rheumatoid arthritis and other autoimmune diseases occur when our bodies remove certain cells and tissues or cause harm so that these tissues can’t function as they do in health. Emerging science suggests this is not because our bodies are attacking themselves at random, but because they mistakenly believe that old traumas or difficult events are still happening and that we are still under threat.

These perspectives are supported by Dr. Robert Navaiux’ studies of the cell danger response in his mitochondrial research lab at UC San Diego and by Dr. Stephen Porges, a research professor at the University of North Carolina at Chapel Hill who came up with polyvagal theory. It is also supported by studies in epigenetics, brain development and neuroplasticity, and by discoveries that adverse life events affect risk for type 1 diabetes, asthma and chronic fatigue syndrome (ME/CFS) among many other diseases.

Positive/ Negative Thinking and RA/RD

How we think about and perceive the world is linked to whether we feel safe, supported and seen. It is also deeply affected by whether the world or parts of our environments have been threatening or stressful.

We see the world through our nervous systems.

Our brains influence our unconscious perceptions based on life events. These may be supportive and give us a sense that we are accepted, welcomed and belong in the world. Or they may be linked to threat following adverse childhood experiences (ACEs) that leave us believing we have to fend for ourselves because no one will do it for us, or that it’s not safe to be ourselves or to be connected because it’s too vulnerable. Our relationships with our parents also shape these perceptions, as do events in pregnancy and birth.

Life experiences have an impact not only on our brains and nervous systems, but also on our immune systems, our cells, our thoughts and our feelings. Together, such events influence our long-term health.

Listen to the Full Interview

at One Broken Mom

Listen to the Podcast

Connect with Ameé

Ameé kindly shared the above terrific cover art and excerpts from our interview.

You can learn more about Ameé’s story and listen to her other podcasts, such as this one about teen suicide and how understanding trauma is helping her parent in a new way.

You can also connect with her or follow her:

facebook

instagram

youtube

linked in

twitter

Rheumatoid Arthritis and Trauma

For more on rheumatoid arthritis and trauma and topics we covered in the podcast, including subtle adversity as a risk factor that we tend to overlook, read the following:

Here are my other posts about rheumatoid arthritis (you can download the free pdfs on ABEs or ACEs below):

What Causes Rheumatoid Arthritis: Adverse Babyhood Experiences (ABEs)

Adverse Childhood Experiences and RA/RD

What Causes RA / RD? Trauma, Links, and Stories of Recovery

RA and ME/CFS: Multigenerational Trauma and Ghosts in My Family Tree

You can also see more general articles that apply to all kinds of chronic diseases in general.

Here’s a summary of the science, a detailed guide to trauma and the nervous system (which includes short surveys), and free ebooks on the chronic illness and trauma connection.

You can learn more about the increasingly recognized research on adverse childhood experiences (ACEs) and risk for chronic disease and calculate your ACE score.

To better understand how adversity affects risk for chronic disease and tips on how to work with trauma and support healing here are tools, books and therapies.

Free PDFs on RA/RD and Trauma

The post Rheumatoid Arthritis and Trauma: A Podcast with Ameé Quiriconi of One Broken Mom appeared first on Chronic Illness Trauma Studies.

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

There’s nothing quite as exhilarating as a home remodeling show that transforms a special space from drab or defective to contemporary, functional and gorgeous in 30 minutes. When you have a chronic illness it’s natural to want a quick fix too.

As the homeowner, however, you realize that remodeling always takes more energy, patience and perseverance than you anticipate. It can rake you over the coals, overwhelm you with chaos and take a huge hit out of your finances. But when you have a vision in mind, it helps you stay the course. The end result can be a remarkably energizing, motivating resource that supports a whole new way of being.

Want to Read this Post on Your Own Time?

You can download the free PDF

You can also learn how I make sense of my illness from a trauma perspective

Addressing trauma as an approach to improving, reducing and healing chronic illness is a lot like a remodel. The process of healing can shake us to our core, drag us through muck, and challenge our beliefs. But it also brings in the light, opens new windows, and transforms us along the way.

The transformation can be more than you even imagine. Here are 22 encouraging tips to support your process of healing survival and nervous system-based patterns that drive chronic illness (here are examples of books, therapies, and tools for working with trauma). I speak from personal experience on my own healing journey with chronic fatigue syndrome (ME/CFS), asthma, IBS and food intolerances (with a special update at the bottom), as an experienced trauma-based somatic psychotherapist, and as an integrator of the trauma and chronic illness research. Change is possible, even if it takes time.

1. Start with your Vision: Your dream of something better.

When seeking to reduce symptoms of chronic illness we start with a belief that healing, at any level, is even possible. Since chronic illness is incurable by its very definition, this often means having to forge our own paths, sometimes against our doctor’s beliefs or recommendations. Sometimes despite others’ fears that we’ll make things worse, or that we’re doing something ridiculous or even irresponsible. It means thinking outside the box and imagining something new.

A few years ago when we still lived in our house, we started a tiny remodel in an upstairs room because it felt stifling.

We had a vision of a much more airy, inviting space.

2. Try. Test. Experiment.

The impulse to make our tiny bedroom more inviting by installing a larger window came after many prior attempts at change. The room had had a blue ceiling when I bought the house. After restoring the ceiling to white, I had painted the walls terracotta in hopes of infusing the space with energy. Instead, it had felt hot and claustrophobic. So I had tried cool colors with an accent wall. That had been good enough for a while.

After David came into my life, we fantasized about building an addition onto the house and turning the room into a walk-in closet. But the cost was prohibitive and zoning codes didn’t allow for it.

So we tried it as an office.

And later as a bedroom.

The space remained unsatisfyingly confining even as it was very functional.

3. Explore impulses. If they resonate, trust and try.

One evening, the idea of enlarging the south-facing window to capitalize on the best view of the house popped out of my mouth. The fact that the idea surprised me was an indication of potential wisdom deep within. Part of the inspiration came from the possibility that it might make the space feel larger.

Considering the role of trauma as a risk factor for chronic illness is rarely our first thought. This is partly because adversity as a risk factor for disease is vastly under recognized in medical care despite the research. It’s also because most of us don’t realize we’ve experienced trauma as our society holds the mistaken belief that trauma only involves the big stuff.

Healing trauma offers the possibility of increasing our sense of space within our bodies just like a window does in a home. It can also facilitate the process of healing chronic illness.

4. Find the best fit.

After years of trying things to make the room feel better, we only needed to ponder the idea of a bigger window for a short time before feeling clear that it was a good next step for us. The first view out that large new hole completely confirmed just how good a fit it was going to be.

5. Enjoy signs of progress, they are milestones.

Shifts in symptoms or decreases in the effects of trauma often arise quite unexpectedly. This can happen quickly or after long periods of work. When I discovered my first trigger that caused a flare-up of fatigue, I was ecstatic even though my physical symptoms had worsened. I had been wondering whether characteristics of trauma that are well known for PTSD might play a role in chronic disease and had been looking for triggers for more than a year. Celebrating the small victories and signs of progress supports the vision we hold and gives us necessary boosts of encouragement along the way.

6. Notice when the sun starts to come in.

Healing chronic illness by addressing trauma-based patterns in the nervous system and throughout our bodies takes time. My own journey has been much longer than I ever imagined or hoped. This is not uncommon, especially since this is a new way of thinking and working with chronic disease.

As change begins to happen, we are often tempted to focus on the challenges. But sun begins to shine in too – we get a bigger context for our symptoms and flares, our self-blame and shame start to go down, feelings of helplessness begin to shift as moments of empowerment arise, our reactivity to stress starts to go down with some of our symptoms, and more. The fact that change actually happens is inspiring. Take it in and soak it up.

7. Trauma work can be hard and messy. That’s normal.

Even though we don’t have to address every single little trauma we’ve ever experienced in order to begin to heal (reaching a tipping point is all the body seems to need for its innate ability to recover to emerge), there’s still a lot of dirt to look up when we’re working with trauma symptoms as significant as a chronic illness. Skipping over the messy bits doesn’t really work – most of us have already tried. This is where it can be helpful to keep your vision in your mind’s eye. And to keep learning about trauma. To remember that feeling the pain, grief, loss, fear and other feelings is tolerable when we do it with a compassionate other such as a skilled trauma therapist. Or when we can talk with a friend, write in a journal or resource with a book or in nature. Hang in there, this is just a phase in the healing process.

8. Keep calm and strengthen your inner observer.

Part of working with trauma involves learning how to not react and to simply observe from a calm, neutral place. This might show up as experiencing a symptom flare and the despair it engenders while at the same time encouraging even a small part of you to witness what is happening without reacting. Having an observer on board is one of the skills we develop as we work with and heal trauma. It is a part of us that learns how to notice what is happening without getting attached. We can have our feelings of grief or anger or frustration even as a part of us watches with compassion. Our observing selves grow and the process becomes easier with time.

9. Reap the rewards.

When your symptoms decrease or shift or soften in some way – your anxiety lessens, you recognize a flare, you resolve a trigger and recover more quickly, you react less to minor stressors – play a little. Stretch your wings in a gentle way and do that thing you’ve wished for but haven’t been able to tolerate – maybe it’s going to a restaurant after a long period on a limited diet, or going to a class or support group. Maybe it means taking the previously intimidating walk down your driveway to get your mail and resting before you head back. Or simply take a break from the work and reward yourself in a resourcing way.

10. Other areas in our lives are affected.

When we work on healing chronic illness, it affects many areas of our lives. We may decide to change our diets, meditate, or quit a stressful job. Our finances may get tight. Our spouses may find it challenging as we set new boundaries, go through cycles of anxiety or grief. Or they may be surprised and need to adapt as we come into greater connection with them and with life. We don’t plan all of these things but impulses arise. When we have the motivation, we take on new things to keep changing and supporting our process of transformation.

Once we had the new window installed, I wanted to paint the bedroom a fresh new color. I also got inspired to beautify the closet on the other side of the room, both inside and out.

11. Invite resources and support for your journey.

We don’t think twice about using a ladder to reach out-of-the-way places and making sure they are stable before we climb them. Practice the same kind of equanimity as part of your healing journey.

Let yourself slow down if that’s what you crave. Give up on doing everything. Spend time in nature if it feeds your soul. Get a dog if you crave nonhuman company. Or a cat. Talk with friends who can listen without judging and don’t share as much with those who can’t.

12. Make room for Self Care.

Self care involves things like saying no when you don’t want to say yes. Getting enough sleep. Eating in ways that feel good to you. Meditating, doing yoga or having lunch with friends. Working out or exercising in gentle ways that help you feel good. Not overspending your spoons – or observing without judgment when you miss and spend too many, or have a day of pushing through.

Self care is not frivolous. It takes effort and it involves making a clear decision to put yourself at the top of your priority list. Self care is a commitment to loving and respecting yourself at least as much as you love and care for others.

I used a no-VOC paint for the room as a form of self care and care for the planet that fits with my desire to support health in others. I could still smell the paint a little so I wore a mask because it eased my anxiety since I have relatives with multiple chemical sensitivities.

13. Chaos happens.

There are inevitable bumps on the road to transformation. You get triggered by a family visit, you set a new boundary and freak out for a little bit after taking such a bold step, you have a flare that feels like a set back. Acknowledge these changes, recognize these are part of healing trauma, and remind yourself of your dream so you can carry on as you’re ready.

14. Inspire yourself with the little things.

During the longish period of painting the room that took a number of days (weeks?) so that I could pace myself, I put up one of my favorite blouses as a source of inspiration. Do the same for your healing journey. Cut or buy a bouquet of flowers. Make something with one of your power tools. Simplify and make room for your art or crafting. Update your bedside table to include your favorite books or a trinket that makes you smile.

15. There are many layers to healing.

  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Hi everyone! I have 3 new downloads for you. The first includes this post as part of ebook 5, showing how adverse childhood experiences (ACEs) increase risk for chronic illness and how it’s not psychological. I originally published this post in May, 2015 and have since made updates. It now includes the ACE questionnaire, which you can fill out below to see graphs and other results. eBook 5 includes this post and two others on ACEs, the ACE questionnaire, and the ACE fact sheets, which you can download as a free PDF or kindle below or from the free ebooks page.

You can get the others from my free ebooks and downloads page or directly within the posts. One gives you the details of how adverse babyhood experiences (ABEs) increase risk for asthma (and other chronic diseases). Even more relevant, it shows how healing the effects of ABEs can sometimes also cure asthma in kids. This research shines a light on how recognizing and healing the effects of trauma can offer potent tools for prevention and treatment of chronic diseases of all kinds.

The third download combines 4 posts on trauma and type 1 diabetes, some if which are sequels to the chronic illness and trauma series I introduced 2 weeks ago. May these new docs be helpful!

Adverse Childhood Experiences and Chronic Illness

If you have a chronic illness, research showing links between adverse childhood experiences (ACEs) and chronic illness may help begin to make sense of your symptoms.

They explain why it’s not your fault.

And why it’s not in your head.

In this post you will be able to calculate your ACE score and see graphs of your anonymous results, get explanations of what ACEs are and what your ACE score means, download ACE fact sheets to give your doctors and other health care professionals, and learn how ACEs are more common than we realize, highlighted by an example from the 2014 movie “Boyhood.”

You can watch videos from two of the most compassionate doctors I’ve ever heard (the two who created the ACE questionnaire) and learn about the specific research linking adverse childhood experiences and chronic illness.

What’s also important to know is that the science linking adverse childhood experiences and chronic illness offer vital new tools and resources for working with symptoms, triggers, flare-ups and other common experiences associated with chronic illness.

They may also help explain chronic symptoms that have gone without explanation or understanding.

Get eBook5: ACEs

This free ebook comes in PDF and kindle formats. Both contain this post with 2 other blog posts and the ACE questionnaire. The PDF includes the two ACE Fact Sheets (they do not format well for the kindle version).

What’s Your ACE Score?

In the 1990s Dr. Felitti collaborated with medical epidemiologist Dr. Robert Anda from the Centers for Disease Control in putting together the ACE study (1)Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study [see comments]. Am J Prev Med, 1998. 14(4): p. 245-58. Full Text.  After detailed research Anda chose 7 areas of childhood trauma to examine and soon added 3 more. He drew from areas for which national programs were being created at the time (2)Huff Post Part Three.

Each of the 10 ACE questions receiving a yes gets 1 point, even if you have had more than one exposure or many years of exposure to a particular type of ACE. This gives a maximum of up to 10 points.

All the questions refer to events that occurred before the age of 18.

The ACE questionnaire is not a test. It is a tool that will give you an idea of a few kinds of adverse experiences or traumas that have been found to increase risk for chronic illness and other health conditions, among other difficulties.

Calculate Your ACE Score with the ACE Questionnaire

Below is the original ACE questionnaire, developed and first studied in 1998 by doctors Vincent Felitti from Kaiser and Dr. Robert Anda at the Centers for Disease Control (CDC).

* Your responses are anonymous and are also reflected in the identical questionnaire and graph on the ACEs Fact Sheet blog post.

ACE Questionnaire Includes “Zero” Option 2018 July





If you are human, leave this field blank.
Calculate your ACE score by checking the box for each kind of event you experienced. If you experienced none of these ACEs select the last box only, starting with “Zero…” Start each question with, “Before your 18th birthday …”

Abuse, Psychological: Did a parent or other adult in the household often or very often…swear at you, insult you, put you down, or humiliate you? or act in a way that made you afraid that you might be physically hurt?
Abuse, Physical: Did a parent or other adult in the household often or very often…push, grab, slap, or throw something at you? or ever hit you so hard that you had marks or were injured?
Abuse, Sexual: Did an adult or person at least five years older than you ever…touch or fondle you or have you touch their body in a sexual way? or attempt or actually have oral, anal, or vaginal intercourse with you?
Neglect, Emotional: Did you often or very often feel that…no one in your family loved you or thought you were important or special? or your family didn’t look out for each other, feel close to each other, or support each other?
Neglect, Physical: Did you often or very often feel that…you didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or your parents were too drunk or high to take care of you or take you to the doctor if you needed it?
Loss of a Parent: Were your parents ever separated or divorced during your first 18 years? or was there a loss of a parent for any reason?
Domestic Violence: was your mother or stepmother: often or very often pushed, grabbed, slapped, or had something thrown at her? or sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard? or ever repeatedly hit over at least a few times or threatened with a gun or knife?
Substance Abuse: Did you live with anyone who was a problem drinker or alcoholic, or who used street drugs?
Mental Illness: Was a household member depressed or mentally ill, or did a household member attempt suicide? Or was someone in a hospital for mental illness?
Jail (Incarceration): Did a household member go to prison?
Zero: I experienced none of these ACEs.


Submit to Update & See Graphs

You can download free ACEs fact sheets summarizing chronic illnesses and other health conditions affected by ACEs below. These include the ACE questionnaire and can be used to inform or educate family members, colleagues, your doctor(s) and others. A full page of references are included. Or just directly download the ACE questionnaire here.

What Your ACE Score Means

When the first results of the ACE study were analyzed in the 1990s, Felitti and Anda were stunned. “I wept,” Dr. Anda says. “I saw how much people had suffered and I wept” (3)Huff Post, Part Two.

What they saw was that experiences like these are staggeringly common (4)Felitti 1998: Full Text. These results have been replicated throughout the U.S. and around the world in the past 20 years since the first ACE study was published (5)Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366.

  • 50% of adults in the first ACE study and later studies have experienced one or more ACEs
  • 1 person in 4 grew up in a household with a person addicted to substances such as alcohol or recreational drugs
  • 1 in 10 grew up witnessing domestic violence
  • 2 in 10 individuals here in the United States have been sexually abused
  • 3 in 10 have been physically abused.
  • 1 in 6 has a score of 4 or more
  • People with a score of 6 or more, like Mason, have a life expectancy that is 20 years shorter than people with no ACEs.
  • Participants with these scores are not just the poor or the disenfranchised. The original study participants were a lot like Mason and many were even better off. They were 80% white (including Latino), 10% black, and 10% Asian. Most were middle class, college educated and had good jobs and health insurance.

The percentage of individuals who have experienced ACEs like Mason from the movie Boyhood (I’ll tell you about his story below) is shocking.

So is the link between adverse childhood experiences and chronic illness, which I’ll describe after Mason’s story.

You can listen to Dr. Felitti’s description of the questions in this 10 minute video below and the degree of compassion he expresses about what the research has shown us.

What is the ACE Score? - YouTube

What are Adverse Childhood Experiences?

ACE Study DVD Pre-View.mov - YouTube

The Adverse Childhood Experiences (ACE) research refers to what now involve hundreds if not thousands of studies in the U.S. and around the world (6)Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366 conducted in the past 25 years. Results have been reproduced in over 35 states and in Washington DC. They explore the relationship between difficult childhood events and chronic behavioral, mental and physical health problems in adult life.

An informative 3 Part series on ACEs in the Huffington Post calls it the largest, most important public health study you never heard of (7)Stevens, J.E., Part One, (8)Stevens, J.E., Part Two, (9)Stevens, J.E., Part Three, (10)The author’s blog is a source for up to date information about ACEs, called ACEStooHigh.

Despite the overwhelming clarity of the findings, the large number of participants (17,000) and ongoing findings with existing patients; despite the study being both retrospective (getting information using surveys of participants’ childhood experiences) and prospective (following the first group of 17,000 participants and 450,000 others now for 15 years at Felitti’s clinic), the results have largely been met by the medical community with silence (Huff Post series, Part Two) (11)as mentioned in the video clip above and updated to 450,000 in a personal communication with Dr. Felitti in April 2018.

Dr. Vincent Felitti, chief of the Department of Preventive Medicine at Kaiser Permanente, first came upon the link between adverse childhood experiences and chronic illness as well as other forms of reduced health in adults by accident. In the 1980s he was trying to understand the 50% dropout rate in his weight loss clinic and decided to interview people to learn why. After weeks of interviews with people who had left the program he misspoke one day. He was completely surprised by the answer (Huff Post series, Part One):

“Instead of asking, “How old were you when you were first sexually active,” I asked, “How much did you weigh when you were first sexually active?’ The patient, a woman, answered, ‘Forty pounds.'” He didn’t understand what he was hearing. He misspoke the question again. She gave the same answer, burst into tears and added, “It was when I was four years old, with my father.”

Felitti and his colleagues discovered that more than 50% of the people who were struggling with being overweight had a history of sexual abuse, molestation and / or rape in childhood. They were greatly disturbed by these overwhelmingly common findings and the fact that no one in the medical community knew about it  – or believed them when they presented their research.

The Huffington Post articles describe the process that lead to the first ACE study, which found that traumatic events in childhood greatly increased risk for all kinds of chronic health problems later in life, from diabetes, stroke, cancer, being overweight, heart disease and chronic lung disease to substance abuse and other addictions, to depression, anxiety and attempted suicide.

Here are the childhood events that the ACE studies have been measuring through the use of the ACE score (12)see more information, charts, and graphics on the ACEStooHigh blog.

An example of ACEs in The Movie “Boyhood”

Boyhood | Official US Trailer | IFC Films - YouTube

The Oscar-nominated movie Boyhood (13)more on wiki received great acclaim for the daring risks taken by filming it over a 12 year period. I loved seeing the main character, Mason, come of age. But in spite of this element, I found it painful to watch a child growing up in a troubled household and couldn’t understand why people liked it so much (14)Bob Cesca presents a witty summary, “It’s Okay If You Didn’t Like ‘Boyhood’” that pretty much sums up all the other reasons I didn’t like it.

In the opening scene we meet 6-year-old Mason some time after his mother Olivia has separated from his free-wheeling, irresponsible, sometime-musician father. Over time, his parents make some important life changes. She trains as a psychologist and makes a career for herself. He maintains a relationship with his kids and eventually remarries, although he feels constrained in life. Olivia’s 2nd and 3rd marriages are both to alcoholics. Step-dad #1 has outbursts of rage and we (and the kids) come upon Olivia crying as she lies on the garage floor at one point, with the implication that she’s been physically assaulted and knocked down by her husband. In the end, Mason heads to college and Olivia is left with a feeling of terrible empty meaninglessness in her life.

Mason Has an ACE Score of 6

Based on the ACE questionnaire, Mason has an ACE score of 6:

  1. Psychological Abuse (did a parent or other adult in the household often or very often…act in a way that made you afraid that you might be physically hurt?)
  2. Emotional Neglect (did you often or very often feel that your family didn’t look out for each other, feel close to each other, or support each other?)
  3. Loss of a Parent (Mason lived through 3 divorces in childhood, although together they still count as 1 point)
  4. Mother Treated Violently (by step-dad #1 ie: domestic violence)
  5. Substance Abuse (step-dad #1 and step-dad #2)
  6. Mental Illness (any one or all of Mason’s 4 parents may have met criteria for a mental illness such as depression or PTSD (step-dad #2 was also an Iraqi war veteran)

12.5% of the U.S. population has an Ace score of 6 or higher.

Movie reviews and commenters frequently describe an appreciation for how Mason survives his difficult childhood through “resilience and adaptability” and how they liked seeing him make it into adulthood intact.

Ethan Hawke, who plays Mason’s father and who is both divorced and the child of divorced parents in his personal life (15)loss of a parent from divorce or separation is one of the ACEs and gives him an ACE score of at least one from his childhood. It also gives his children an ACE score of 1 since he is divorced as well, tells Charlie Rose in an interview that he related to the way this movie normalizes the fact that we all have secrets.

For Hawke, Boyhood conveys the message that coming from a broken home doesn’t mean there’s something wrong with you. Instead, he finds that it helps you see how no one really has a normal family.

I agree that we are not what happened to us.

Mason’s life is common in our culture, but that does not actually make it “normal.” Nor does his apparent resilience mean that he has fully escaped potential long-term adverse effects.

The ACE studies show us that Mason is actually at high risk of having many difficulties in his adult life, including being at increased risk of developing a chronic illness, dying at a much younger age than his peers who have lower scores, being hospitalized for an autoimmune disease, being depressed, and having difficulties of his own with alcohol or other addictions, among other effects.

We are developing helpful tools for addressing the effects of trauma as well as for preventing many kinds of trauma.

For a powerful example at the community level, see the 2016 trio of articles in the NYT about the inexpensive implementation of “trauma-informed” practices in a few small towns and the tremendous impact early intervention has had on community life, levels of violence, teen pregnancy, suicide rates and school attendance.

Such approaches also contribute to reducing risk for the effects that often show up much later, including chronic illness in adulthood.

As we get better at recognizing trauma in all the different ways it can show up, we can begin to better work with it, including as a way to improve health and symptoms in those of us living with chronic illness.

The World is Beginning to “Get It” About ACEs

We now have incontrovertible evidence linking adverse childhood experiences and chronic illness.

The Adverse Childhood Experiences (ACE) studies are being replicated and increasingly mentioned around the world. The studies have been discussed on National Public Radio (16)Starecheski, L., Take The ACE Quiz — And Learn What It Does And Doesn’t Mean, in National Public Radio. 2015: Washington, D.C. NPR Science Desk: Shots., (17)Starecheski, L., Can Family Secrets Make You Sick?, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. NPR Science Desk: Shots, (18)Starecheski, L., 10 Questions Some Doctors Are Afraid To Ask, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots, (19)Starecheski, L., A Sheriff And A Doctor Team Up To Map Childhood Trauma, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk:..

Read for later

Articles marked as Favorite are saved for later viewing.
close
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Separate tags by commas
To access this feature, please upgrade your account.
Start your free month
Free Preview