I'm Veronique, a former family physician and assistant professor who retrained to learn more about the intelligence of the body. I have been researching the role of the nervous system and how it learns to perceive threat as an important and under-recognized contributor to chronic illnesses of all kinds.
This blog series introduces research that lead me to think about chronic illness in a different way than I was taught as a medical doctor. It presents the science linking chronic illness and trauma.
Throughout the series, I share some of my personal journey with a debilitating illness and how understanding the science of trauma and its effects on the nervous system, immune system, gene function and much more helps make sense of illness – including my own.
It’s allowed me to explore the theories and findings to see if they apply to my own chronic illness and to clients’ and readers with chronic disease.
Learning about research helped me make sense of my history, symptoms, and triggers. It’s also helped me make big strides in healing.
I never thought I’d experienced anything beyond the normal everyday stressors and “little traumas” until I delved into the research.
Even then, I blew off some of the findings at first and didn’t think they applied to me. I’ll tell you more throughout the series.
Until I really started to get an understanding of what “trauma” really means, I didn’t get it.
The term adversity often conveys the concept better than the more researched term “trauma.”
Trauma and adversity refer to events that make you feel unsafe, overwhelmed or helpless. These can be seemingly little things, like small car accidents that we walk away from, and often seem pretty ordinary. But such events affect our nervous systems and perceptions of threat. And their influences are just as potent as rape or war.
The greatest effects of trauma happen with babies and children, because their bodies and organ systems are influenced by their environments.
Below is a list of chronic diseases. You can see if yours is on it. If not, learn more about how subtle events can be. The research still has a ways to go to study all illnesses. So take a look for yourself and see if anything here makes sense to you.
I’ve shared a version of this post and the first post of the series on Health Rising, a blog about chronic fatigue, also known as ME/CFS or “myalgic encephalitis/ chronic fatigue syndrome,” which is the chronic illness I have. My guest post on Cort Johnson’s blog appears with the title “What if ME/CFS is an Intelligent Process Gone Awry?”
I. My Story
I’ve had a chronic disease for 20 years now and have gone from completely debilitated to recovering.
My chronic illness started a few years after I’d experienced two car accidents (from which I seemed both emotionally and physically unscathed), surgery under general anesthesia for cancer, 6 grueling, mind-bendingly exhausting years of medical training and two years as an assistant professor teaching family practice residents and medical students.
My fatigue gradually worsened over a period of 10 years.
At its most intense in 2009 my exhaustion felt “death-like” and I had difficulty being out of bed, as well as sitting, standing and talking for more than a few minutes at a time.
This level of near collapse, which far surpassed anything I’d known even as a medical student or family practice resident, lasted for almost a year.
The perspectives I have since learned showing links between trauma and autoimmune disease – and many other chronic illnesses – have helped me make strides since then.
I have been slowly improving to the point where I can now run errands, spend a few hours with a friend, walk 40 to 60 minutes most days, or occasionally attend a full day workshop among other things.
I’m still limited by my health (although MUCH less so) and I offer no quick fixes.
But the science offers an empowering, accessible, powerful new way to live and work with chronic diseases of all kinds.
The research provides a different way to work with and begin to make sense of symptoms, recognize triggers, understand why treatments can work and then bump into resistance over time, and more.
II. A Large Body of Science Informs the Series
The presented in this chronic illness and trauma series comes from a large body of scientific studies in
the science of attachment (early child-parent relationships)
traumatic stress and more
as well as research from many different chronic illnesses
We’re learning from studies that life experiences interact with our genes to affect long-term health.
This is not because our diseases are psychosomatic as has long been believed and wielded to judge many who are sick.
It’s because the new science of epigenetics is showing us that life events interact with our growing bodies and organ systems, starting in the womb, during birth and infancy and throughout childhood. Events later in life compound the effects of these early events and act as “a last straw.”
Epigenetics refers to small chemicals that attach and detach from genes to regulate how they function and how active (or inactive) they are. Experiences beginning in the womb help guide the process of organ development, determining which cells become liver cells or brain cells, and which ones instead become bone or muscle.
Early experiences of stress, trauma and nurturing also influence the epigenetic process and shape our growing organs. They influence whether they will function with extra care and caution because they are primed for survival and highly sensitive to stress, or whether they will know the feelings of safety and the ability to rest, relax and recover.
I start this exploration with research insights from type 1 diabetes with a few studies showing similar findings with other autoimmune diseases.
What I’ve discovered over the years – and with new research I continue to find today – is that there are similarities among risk factors for chronic illnesses of all kinds.
Of note, many people develop ME/CFS, type 1 diabetes and other chronic illnesses quite suddenly following an infection.
Events that trigger onset also include vaccines, exposures to toxins such as mold, to certain foods, to stress or traumatic events, and more. Others, like myself, get sick much more slowly, sometimes over a period of years.
While exposures to a variety of different agents may be a direct cause of disease, research suggests that other risk factors make some of us more vulnerable to these environmental triggers or amplify their effect (Dube, 2009, Burke Harris, 2018).
As such, the events that occur just before onset may not be a direct cause of our illnesses but instead reveal the tip of an iceberg. This may explain why some of us get sick following exposures when others do not.
It may also explain why treating for these agents such as viruses, bacteria or toxins are not always sufficient for a cure.
The risk factors I discovered and introduce here and in subsequent posts offer new approaches to address the effects of unrecognized risk factors. These include books and therapies for healing trauma. Trauma therapies are neither cognitive nor behavioral therapies.
evolves through adaptations in our brains and nervous systems – and how they learn to perceive threat
involves a process that begins long before onset or diagnosis
results from a similar process in diseases as different as type 1 diabetes and heart disease, asthma, Parkinson’s, and ME/CFS
arises after exposure to multiple events or “hits”
follows a different pathway for each person – even in the same disease
may be caused by different mechanisms – even in the same disease
This series documents the steps that lead me (and many others) to these new views.
IV. Diseases Affected by Stress & Trauma In Pregnancy, Birth and Infancy
This is a list of some of the diseases I’ve discovered that are increased in people who experienced trauma (or whose mothers’ experienced emotional and physical stressors) during pregnancy, birth and infancy. This list comes from multigenerational research called the Fetal Origins of Adult Disease (FOAD) listed at the National Institutes of health and studies in individual diseases, as described in posts of this series.
Stress & Trauma in Pregnancy Increase Risk for:
diabetes, type 1
inflammatory bowel disease
Blood Pressure (high)
Diabetes, type 2
Fat metabolism / lipid metabolism
Heart disease (coronary artery disease)
Mental Illness such as Depression, Anxiety, Bipolar Disorder, Schizophrenia
The series begins with a look at the effects of adverse events such as stress and trauma in early life.
The first 3 posts look specifically at the effects of stress during pregnancy, birth and infancy.
Post #1 looks at what we’ve learned about the effects of trauma from antibodies and autoimmune diseases. I use the example of type 1 diabetes and share a few studies from other autoimmune diseases. One of the most intriguing details I learned was how researchers discovered that risk begins years before the onset of a chronic illness and in fact starts before birth.
Post #2 deepens our understanding of how the same kinds of stressful events that increase risk for autoimmune diseases are also risk factors for asthma. It delves more deeply into how stress and trauma affect a mother’s (and father’s) ability to bond with their baby and how this, in turn, affects risk. You’ll learn a wonderful story of how one researcher to accidentally cured a child’s asthma and figured out how to do this in a reproducible way. The science has helped me make sense of my own experiences of asthma as well to reduce my symptoms drastically.
Post #3 introduces some of the most exciting research I’ve found to date. It describes what I consider to be landmark studies showing HOW early stressors affect us. They alter both a mother’s and her baby’s gene function through epigenetics.
The good news is that a mother’s experiences of stress do not mean her child will develop an illness. This is because some epigenetic changes can be reversed. This and other studies and experiences suggest that some symptoms and chronic diseases can be prevented or onset delayed. As I’ve explored with my own illness, they may also help us decrease symptoms, worsen at slower rates or perhaps even reverse the course of disease.
What the research implies, however, is that we DO need to provide much more emotional and physical support to women and families during pregnancy and the early years. We also need to have much higher awareness in obstetrical and pediatric care and to become trauma informed.
There are many things that are effective for improving health in pregnancy and birth, and that can reduce risk and lead to great outcomes and improved long-term health. This will be the topic of later posts in the series.
Post #4 is a recap and short overview of risk factors in pregnancy, birth and infancy.
VI. I Started With Diabetes Research
I began my explorations wondering about potential links between chronic illness and trauma with a look at studies in type 1 diabetes (T1D). This is the autoimmune form of diabetes.
At first, I studied T1D out of curiosity. And because, unlike illnesses such as ME/CFS, T1D has clear diagnostic criteria of high glucose levels in the presence of low to no insulin, which make it easy to identify and study.
It turns out that the presence of antibodies, which are found in most people with T1D, is an additional biomarker that makes this disease especially amenable to study although I didn’t know that when I first set out.
I also initially focused on studies in T1D because of the judgmental tone and blame so frequently found in ME/CFS research.
I have trouble imagining that anyone would tell a person with T1D that their disease is all in their heads or psychosomatic, or that all they have to do to recover is to meditate, decrease their stress levels, exercise, do cognitive behavioral therapy, develop better health habits or to just “try harder” (see my recent post on the limits of mind body medicine).
What I found in the T1D research turned out to apply to other diseases, as you can tell by the lists above.
1. Introducing Type 1 & Type 2 Diabetes
T1D is the more rare form of diabetes and is most commonly caused by an autoimmune process. This process is associated with the destruction of insulin-producing cells that lead to a lack of insulin. The cause is due to interactions between genes and environmental factors but remains unknown. Survival in T1D requires injection of insulin.
This contrasts with the more common and well-known type 2 diabetes (T2D), which can be associated with obesity (though not always) and sometimes managed with diet, activity levels, and weight loss. It is often treated with oral medications (pills) and sometimes also with insulin. People with T2D have difficulty utilizing insulin and their cells are “resistant” to it. They often have high levels of insulin.
Other forms of diabetes exist, including the recently discovered type 3c diabetes, which results from inflammation or direct injury to the pancreas.
We are in the midsts of an epidemic of both T1D and T2D.
2. My Big “What If” Question: What if chronic illness reflects an intelligent mechanism gone awry?
When I first started out to better understand chronic illness, I wondered whether the underlying drivers of disease might reflect an intelligent, natural process..
This post offers two ACE fact sheets that summarize the science of adverse childhood experiences (ACEs) and their effects on risk for chronic illness (the Chronic Illness ACE Fact Sheet), as well as depression, PTSD and other mental health conditions, and more (the All Effects of ACEs Fact Sheet).
Both ACE fact sheets are quick to skim, referenced with many studies, and summarized on a single page (facts on one side, references on the other). The downloads include the ACE questionnaire.
If you have a history of chronic illness and adverse childhood experiences (ACEs) – and wish there was a way to convey the huge body of scientific evidence explaining how life experiences you never chose influence risk of getting sick – these fact sheets (Part 2) are especially for you.
If the ACE information is new to you, the ACE studies look at 10 types of adverse childhood events between birth and 18 years of age that alter brain function, influence the immune system and increase risk for autoimmune disease and other chronic illnesses, depression, anxiety and other problems later in life. Understanding ACEs and other types of more subtle trauma can help make sense of illness and offer new options to take charge of your health and your life. You can learn about ACEs in Part 3.
If you are a doctor, psychotherapist, psychologist or other health care professional (or provide other kinds of services such as if you are a teacher, lawyer, social worker etc) you can use the ACE fact sheet with patients and clients as well as colleagues. In addition to learning about ACEs throughout this post, Part 6 on how to incorporate ACE screening into clinical practice is especially for you.
I was further motivated by science writer and fierce ACEs advocate Christine Cissy White, who described the best medical appointment of her life as being with a health care professional who “got it” about ACEs. Her article includes the treatment recommendations that helped.
Cissy also describes how she used her knowledge of ACEs to get a refill. She was seeing a new, temporary doctor and instead of having to repeat her whole painful traumatic history, she explained that she had a score of 8/10 and what the study found. It simplified her life that day and informed her doctor at the same time.
When people learn about ACEs it can change their lives, as pediatrician Dr. Nadine Burke Harris describes in her 2018 book on ACEs The Deepest Well ,
“These are tears of pure, unadulterated joy.” “Why joy?” … “Because I understand now why I am this way. I understand why my siblings are this way. I understand why my mother raised us the way she did. I understand that I can break this cycle for my children and I understand that I’m not a victim, I’m a survivor.” p. 178
Oprah Winfrey says her life has been changed too since learning about the ACEs research. This Sunday, March 11th on CBS 60 minutes, Oprah interviews Dr. Bruce Perry, a psychiatrist and one of the leaders in the scientific and clinical world talking about the effects of trauma on children and brain development.
In a preview on CBS This Morning, she acknowledges her own history of sexual abuse, states how excited she is about the ACEs information (so much so that she would jump on tables and dance if it helped spread the word), and explains that it’s changed the way she sees and does things, including how she works with her philanthropies.
Unless you fix the trauma, you’re working on the wrong thing .… If you don’t fix the hole in the soul… where the wounds started, you’re working at the wrong thing…. It’s not an excuse. It’s an explanation….. It’s HUGE…. And it’s a game changer.
I use photos of Oprah and Dr. Nadine Burke Harris in this post because they are spreading the word and becoming the new faces of ACEs. To be clear, neither has endorsed this post nor my ACE fact sheets [but feel free to spread the word :-) ].
Dr. Vincent Felitti recommends changing PATIENT’S expectations as the best way to get doctors to learn about ACEs. Felitti is a co-author and principal investigator of the ACE study, and speaks directly to the challenges in spreading the word and engaging doctors to act in the video at the bottom of this post. He believes the best way to involve doctors is by helping the general community truly understand how ACEs affect them and their health and how they can begin to heal – and that this will create a potent market force that will incentivize doctors and medical organizations to change (hear his comment at 1 hour and 30 minutes or at exactly 1:30:00).
Hundreds of ACE studies have revealed that life events increase risk for chronic illness, depression, anxiety, PTSD, severe obesity, difficulty in marriage and much more. This is because adversity influences our genes, shapes our nervous and immune systems and affects long-term health.
Healing the effects of early trauma is possible, and can reduce or even prevent many of the leading causes of illness and death.
ACE screenings are taking place in schools and jails, in mental health clinics and most recently, in medical care. ACEs are used by some medical doctors as the new vital sign, just like blood pressure and weight , but most health care professionals do not yet know of the research.
Knowing about ACEs is a huge priority for our health and well-being as well as in health care. An easy-to-read one page summary of the numerous effects of ACEs is one more tool for addressing the gap in knowledge and helping patients, kids, parents and others get the care and support they need so healing and prevention can begin.
These are all reasons we need to spread the word about ACEs. And that’s why I’ve created these ACEs Fact Sheets.
2. Two Fact Sheets: Chronic Illness and Other Effects of ACEs
These two free, downloadable ACE fact sheets summarize the wide range of detrimental effects that can occur from experiencing any of the 10 adverse childhood experiences (ACEs) described below in Part 3 (Section II).
The Chronic Illness and Adverse Childhood Experiences ACE fact sheet focuses exclusively on physical diseases and lists over 20 chronic illnesses and physical health conditions that are more common with a history of ACEs (a longer list is included below in Part 3, Section IIIA).
The chronic illness and adverse childhood experiences fact sheet does not include risk for mental health and other non physical conditions common with ACEs. This is because medical doctors often associate trauma with purely psychological effects. The science shows that this perception is inaccurate and out of date.
Having a form with all the important information about chronic illness and adverse childhood experiences should make it easier for your doctor to understand why you are sick, see how it’s not in your head and consider how to help you from a different perspective.
The All Effects of ACEs fact sheet summarizes all of the effects of ACEs, which include autoimmune and other chronic illnesses, PTSD, depression, anxiety and rage and other mental health conditions along with much more (see Part 3, Section IIIB).
The All Effects of ACEs fact sheet can be used for chronic illness as well as if you have multiple conditions in addition to or separate from chronic illness; if you are seeing a psychiatrist or if you want to inform your regular health care professional or other professional about the many effects (teacher, lawyer, emergency services provider, etc).
3. What’s On the ACE Fact Sheets: The ACE Findings
Most of the information in Sections I-IV below is summarized on the ACE Fact Sheets.
References are numbered according to the chronic illness ACE Fact Sheet, with a few specific references identified for the All Effects Fact Sheet and listed at the bottom of the references.
I. The Adverse Childhood Experiences (ACE) Study
“ACEs need to be a vital sign” quote by Dr. Jeffry Brenner, founder and executive director of the Camden Coalition of Healthcare Providers, and a 2013 MacArthur Foundation genius award winner. Cited in Chronic Illness ACE Fact Sheet to educate your doctor. Dr. Nadine Burke Harris says the same thing.
The adverse childhood experiences (ACE) studies show that trauma in childhood increases risk for autoimmune  and other chronic diseases, and additional health problems later in life . A Kaiser-CDC study with more than 17,000 participants identified this connection and findings have been reproduced in a continuation of this study, which includes over 400,000 patients, as well as hundreds of other studies with different populations .
The key point from this body of research is that the effects of childhood trauma are not just psychological. Trauma alters brain development, function and structure; autonomic nervous system regulation; physiology, stress responses [4-6], gene function (epigenetics)  and more. The American Academy of Pediatrics has used this and other research to develop a new policy , assessment tools, and a trauma toolbox for health care providers in primary care (pediatrics, family medicine, internal medicine).
The results of the ACE studies are making waves because an understanding of ACEs provides opportunities for prevention and treatment of the leading causes of sickness, suffering and early death in the United States.
The ACE study can be found on websites such as the World Health Organization (WHO), the Centers for Disease Control (CDC) , and the Robert Wood Johnson Foundation (RWJ), which is the nation’s largest public health philanthropy. ACEs have also in the national news on PBS , NPR , the New York Times , the Huffington Post and will air on CBS 60 minutes this Sunday, March 11th, 2018 with Oprah Winfrey.
You can find more information about ACEs and chronic illness in my post that uses an example from the movie Boyhood. For the largest overview on ACEs, how they are being studied, used and implemented around the United State, see the news and educational site ACES Too High.
II. How Are ACEs Measured? ACE Score is based on a maximum of 10 points
The ACE questionnaire asks about exposure to 10 specific types of trauma from 0-18 years of age. Original Qs for the ACE study were drawn from areas in public health for which national programs were being developed in the 1990s. Other types of trauma also increase risk (accidents, unsafe neighborhood, being bullied, medical procedures, homelessness etc). 1 point for any event per category. You can figure out your ACE score by taking the questionnaire and it is also included in both ACE fact sheets.
Physical abuse (Stats: 1 in 3.5 Americans)
Sexual abuse (1 in 5)
Emotional abuse (1 in 9)
Loss of a parent from divorce or separation (loss for other reasons, including death, were not included in the original ACE study but also increase risk)
Violent treatment of mother (1 in10)
Member of household: mental illness (1 in 5)
Member of household jailed (1 in 30)
Member of household: substance abuse (1 in 4)
NOTE: One of the limitations of the ACE study is that it only looks at 10 types of trauma. In addition to the 10 specific types of trauma on the ACE questionnaire, other serious life events also increase risk for chronic illness, mental health conditions and other long-term health problems. Such events include the death of any close relative and not only separation or divorce of a parent. When a parent (or sibling or grandparent or other dearly loved one) dies, for example, it affects a parent’s experience and consequently their ability to be emotionally present and available to a child etc. Abuse of any member of the household and not only the mother also affect risk, as can growing up in an unsafe neighbourhood, a war zone, refugee camp, or in foster care.
any negative life event occurring in a state of relative helplessness— a car accident, the sudden death of a loved one, a frightening medical procedure, a significant experience of rejection–can produce the same neurophysiological changes in the brain as do combat, rape, or abuse.
Even though I was once a family doctor, it wasn’t until I developed a chronic illness and started having to make frequent office visits as a patient that I realized I needed an easy-to-read summary of my history to bring to new doctor appointments.
This was partly because I didn’t remember every detail about all of my symptoms, past diagnoses or tests, or medications. It was because my mind wasn’t always sharp when I wasn’t feeling well. I was also motivated by the fact that office visits with new health care professionals could be quite stressful since I didn’t know how I’d be received. Even though I’m a doctor that doesn’t always mean much, especially if you have symptoms that are difficult to diagnose or for which no diagnostic tests exist (I have chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME/CFS). Finally, it was because I got tired of hand-writing the same summaries and notes every time I scheduled a new medical appointment.
Knowing from personal experience that doctors can get overwhelmed when a patient gives them too much information (even during hour-long appointments), I decided to summarize the important stuff onto single pages. It enabled me to take control of my information, reduce the amount of papers I gave to my doctors, and simplify one small aspect of my chronic illness life. It also supported me to feel more put-together during appointments, which helped me stay more emotionally neutral, regulated and able to see my doctor as a consultant who was there to help me rather than an all-knowing, all-powerful God.
In short, it was empowering.
This guide will help you create your own one-page medical summary to bring to new doctor appointments, whether you have a chronic illness, have had cancer or a complicated history of medical problems, need a summary for disability or health insurance applications, or are healthy as a horse but wanting to streamline your or your family’s medical records.
Once you have a summary of your medical history it’ll make appointments run more smoothly, especially if your health history is complicated.
It can also help your doctor listen more fully to the details you have to add, as well as see and feel how you are invested in your health and that you are together in this and part of the same team.
It might even put a smile of appreciation on your doctor’s face.
The One Page Summary
One common reason for seeing a doctor, especially if you have a chronic illness or other long-term health problem, is to get help in diagnosing and treating symptoms as efficiently as possible, so you can find the best treatments available.
Summarizing your history in an easy-to-read, one-page format is a helpful way to give your doctor a quick overview of the whole picture. A summary includes your:
work-ups and test results you may have done so far
potential risk factors
possible contributions from family history
This gives your doctor some context and helps them hone in more intelligently on your main problem. There are two examples of one page medical summaries in the downloadable guide.
If you are pretty healthy, one page is all you will need to summarize everything. Even if you have one or more chronic illnesses or a history of complex health problems, however, it’s still possible to summarize important parts of your history onto one page. If you do have a long medical history, however, you may find it helpful to make other one-page summaries (I introduce this in an appendix in the free guide).
The same summary can be helpful if you’re going in for a medication refill or for your annual exam.
To start, then, you’ll want to create a one page summary of your health history. This is the focus of today’s post.
Since most of us see a doctor from time to time, I’ll keep things simple by using the term doctor to represent all health care professionals throughout the rest of this post.
Make it Easier for Your Doctor (and Therefore for You)
Tips for making it easier for your doctor include:
keeping it to one line per topic (such as one line per medication, diagnosis or procedure)
using a specific order, which I’ll show you below
making it no longer than a singe, one-sided page (too much information can be overwhelming)
using a normal-sized font to make it easy-to-read (I use Times in 12 point font)
Step 1: Gather Information & Prepare
Go through the steps below starting with what you know rather than with pulling together all your medical records. It’s generally what we already do as we fill out forms at new doctor appointments and when our doctors gather our medical histories by asking us questions. What you remember is likely more than enough to create a well-rounded one page summary of your medical history.
Next, give yourself the time you need so this can feel supportive and empowering rather than overwhelming.
Going through your medical history can feel like you are rummaging through every bad thing that’s ever happened to you, and can therefore be stressful and emotionally difficult. So take your time, take breaks and pace yourself. If you have a complex history, this process may take a few days rather than a few hours. That’s often the kind of time we already spend preparing for new doctor appointments and it adds up when there are lots of new medical appointments.
Because I have a chronic illness with a number of complicated symptoms, for example, it took some time for me to create my summary. When I first made my own one pager, I spent a few hours a day for probably a week thinking things through and figuring out what to put in (and what to leave out) of my one page summary. But that was the largest time investment I ever had to do. I now spend 10-15 minutes updating it before a specific doctor’s appointment (sometimes a little more if a lot has changed and because…. ahem, I’m one of those people who really likes organizing information and pulling all the little details together).
You can get support by getting help from a friend or family member or even collaborate and create your one-page medical summaries with them.
Just remember, there is no perfectly right way to do this. No history you’ll ever give is likely to be exactly the same, and if 10 different doctors were taking notes while you spoke, each one would summarize your history slightly differently. Figuring out what’s important, relevant and how to be succinct takes time and that’s completely normal.
Step 2: Use These Categories, In This Order
When doctors are trained in medical school, we learn a methodical approach for gathering a patient’s history as a way to keep it in order in our minds. It also helps us make sure we cover all the important parts.
Creating your form in this order makes it easier for your doctors to tuck important pieces of information into the back of their minds while they work on helping you solve your problem. This is an especially good format for new doctor appointments when your full history is needed, such as for a a first visit with a new specialist and a new patient exam, etc. I’ll help you see where to stash little extra bits of information into this framework later on.
Start here and include a line for each event, symptom or diagnosis that fits under the appropriate category. You can also download a free formatted document to use in microsoft word and start entering your information in that form if you like.
Chief Concern. Also called the “chief complaint” or “presenting problem” by doctors: what symptoms or issues are you most needing help with?
History of Present Illness. More details about your chief concern (symptoms, test results if you have any, when it started, etc). This category is optional since the doctor will ask you for more details about your concerns.
Medical History. Where you list your diagnoses, medical problems and hospitalizations. Anything surgical goes in the next category.
Surgical History. Summary of operations and procedures you’ve had. Include the type of anesthesia if you have room (local, general, spinal, epidural etc) and any complications or problems you may have had.
Reproductive History. This section is for women to document any difficulties with menstrual cycles, pregnancies and births, postpartum events such as depression, symptoms or date of onset of menopause, pain and anything else related to the reproductive system. It’s not usually part of a doctor’s history in this order but is so common in many women that I’ve included it here. If you have no concerns in this area, you can leave this entire category out.
Medications and Other Treatments. Prescribed and over the counter (OTC) meds (herbs, vitamins, supplements, etc). This area is usually specific for medications only. I also use it to present other things you may be doing for your health that are useful for your doctor to know (and that can also convey personal motivation, involvement and investment in your health). Dietary changes, physical therapy, acupuncture, mind body approaches such as meditation can all go here.
Allergies. A list of life-threatening allergies to medications. Include the symptoms you’ve had that made you realize you have an allergy such as a rash, chest tightness, trouble breathing etc. If you have room you can include any severe food, insect, latex or other life-threatening allergies.
Social History. Your occupation, education, and relationship status (married, single, widowed, etc), or you could refer to your “social support network,” which does not require marriage to be strong in your life. What you’ve done or had for prevention, such as vaccines, screening tests such as mammograms, pap smears, prostate exams. Any life-style risk factors such as smoking, alcohol, etc… This is a place to mention emotional or physical trauma if it has played a role in your symptoms and you’d like your doctor to know (The step-by-step downloadable guide describes pros and cons for doing this and how you might education your doctors and cite a landmark research study on your form).
Family History. Health problems or chronic illnesses in siblings, parents, grandparents & other close relatives.
Step 3: How to Fit It On To One Page
If you’ve completed the steps above and it all fits onto one page you are good to go. If you’d like to make it as easy and quick as possible for your doctor to scan you can get additional tips in the step-by-step guide).
Because I’ve had a chronic illness for 20 years, I find that once I’ve filled in all the categories above it is another step in the process to pare down my detailed medical history to one page. This additional step can take a little extra time and that’s normal.
I start by seeing how many lines I have gone over the first page and onto a second. If I have 2 whole pages of information, it indicates that I probably need a separate one pager for the topic that takes up most of the space (medications? labs and test results? a chronic illness?). That’s something you can create if you have the energy and interest, at some point.
If I just have 4 to 10 lines on the second page, I know I should be able to make it fit. And I know just how much space I need to create.
So I start with whichever category feels easiest to me. Family history, for example, can be a place to shorten with relative ease. Maybe you can fit both of your parents’ health onto one line instead of two. The same with other family members as you decrease some of the detail you initially provided.
This is also where you might be tempted to use abbreviations. If you’re comfortable with them, use them. Or you might find other language to use instead of the words you first chose (“mammogram ok” instead of “mammogram normal” can save just enough room to fit your info onto one line instead of two). If not, consider leaving a few details out instead. Your doctors can always get more information from you if they want it.
This part can feel fussy or finagle-y but it’s what creates an easy-to-read summary that is quick and easy for your doctor to scan. Stay with it. And if you need help, ask someone you trust, such as a compassionate family member, friend or colleague to see if they have ideas for making it shorter or easier to skim.
The tools I introduce here include books and therapies for chronic illness that are helpful for healing the effects of stress, trauma and subtle perceptions of threat. You can download a pdf of this blog post with your email and also get a one page summary of types of therapies for different types of trauma.
I refer to therapies for chronic illness specifically because this is the focus of my blog, however the books and approaches mentioned are also helpful for mental health conditions and other symptoms including PTSD, depression, anxiety and other effects of trauma. This does not imply that illness is “all in your head.”
Trauma and subtle perceptions of threat influence risk for chronic illness and other problems because life experiences interact with our genes to shape long-term health. Therapies for chronic illness and other symptoms work with brain plasticity and these changes in how our genes express themselves can sometimes be reversed (1)Yehuda, R., et al. (2013). “Epigenetic Biomarkers as Predictors and Correlates of Symptom Improvement Following Psychotherapy in Combat Veterans with PTSD.” Front Psychiatry 4: 118. The approaches support a nervous system that operates from subtle perceptions of threat and are helpful whether or not you have a known history of trauma.
The modalities introduced below can be used in combination with other tools (medical treatment, medication, complementary and alternative health care, diet, mindfulness, meditation, vagal stimulation etc). They can help you make sense of why one thing works and another does not, why sometimes an approach works for a while and later does not and more. These therapies for chronic illness can also make other modalities more effective. And they support healing when nothing else works.
This page gives you a sense of which approaches might be a good fit for you, offer tips on how to find and choose a therapist and give you insights to help you find other approaches that appeal to you even if they aren’t listed here.
When you have a chronic illness it is helpful to consider the perspective that symptoms are often a body’s particular way of responding to the perception of threat.
The perception of threat is usually not conscious.
It can be so subtle that you don’t recognize it, even though your body does. And it can be as simple as not feeling safe.
This perception of threat can come from
strain in relationships or with finances
having had a difficult surgery
a history of a complicated birth
the sense of not feeling safe
trauma in your parents’, grandparents’ or other ancestors’ lives
an infection, which is a common trigger for the onset of all kinds of chronic illnesse
The perception of threat may link to something you experienced in the past but no longer exists in the present.
Rather than a particular thing or event that can be pinpointed specifically, however, therapies for chronic illness can focus or start with a subtle lack of safety or trust; or by identifiying and working with a feeling, such as one that something bad is going to happen even when everything seems to be going your way.
You can also work with chronic illness from such a perspective by exploring current symptoms, triggers, sensitivities to work stress or to foods or odors or places, for example. Such symptoms serve as a guide.
Having a sense of not feeling secure or of impending doom and other difficult feelings is not a sign that your illness is psychosomatic. It is not an indication that you are crazy, mentally ill or that your chronic illness represents a personality flaw. Such symptoms can be triggered by getting a diagnosis of a chronic illness, the unpredictability or severity of your symptoms, as well as by other difficult life events.
These are an indication that your nervous system may be primed to be more sensitive to stress and to other triggers. (top)
Go Slowly, Gently and Include Your Body I
There are many approaches for healing and working with bodily responses to the perception of threat. The therapies for chronic illness I list here work specifically with nervous system survival responses while being slow, gentle and emphasizing the importance of going at your own pace.
For those of you who have experienced trauma, it’s not about reliving past events but about finding the health and wisdom that already exists in your body and nervous system. For those of you with no history of trauma these approaches offer a way of unwinding and softening our intelligent survival responses that have become overactive. (top)
Books for Working on Your Own
There are many activities that support nervous system regulation that you can start on your own or inexpensively with CDs, videos or online. These are helpful for working with chronic illness as well as mental health conditions and do not imply your symptoms are “all in your head.”
Healing Trauma: Restoring the Wisdom of Your Body was written by trauma expert Dr. Peter Levine, who developed the treatment approach called Somatic Experiencing (more below). It includes an introduction to trauma and a series of gentle exercises to start on your own or with a friend or partner. It comes in paperbook and kindle formats as well in audio download formats with a CD and can be taken as an online course. You can also find it at Sounds True. I find two of his books to be among the most helpful to learn more about trauma. These are Waking the Tiger (2)Levine, P. (1997). Waking the Tiger: Healing Trauma. Berkeley, North Atlantic Books and In an Unspoken Voice, which gives an example of how he experienced and worked directly with a recent traumatic event in his own life (3)Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic.
It Didn’t Start with You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle, by Mark Wolynn (4)Wolynn, M. (2016). It Didn’t Start With You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle. This is a powerful book that includes some of the science of how trauma in our parents’ and grandparents’ and other relatives’ lives can affect our health. Mark shares stories of unexplained symptoms that were successfully addressed when understood from this context. His book also provides guidance and very specific steps for working with symptoms of all kinds even if you have no sense of trauma in your ancestors’ lives.
Childhood Disruptedis Donna Jackson Nakazawa’s description of the research on adverse childhood experiences (ACEs) and the story of how learning about this set of studies helped her begin to heal (5)Nakazawa, D. J. (2015). Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal. New York City, Atria Books. She has a number of serious autoimmune diseases that run in the family. Donna shares links between stress, toxic stress and chronic illness, which are slightly different from the trauma perspective, but many similarities exist. Her approaches support nervous system patterns of regulation and include yoga, meditation and mindfulness practice as well as Somatic Experiencing (Peter Levine’s approach, briefly described late in the book).
CFS Unravelled (Rewiring the Nervous System, by Dan Neuffer (6)Neuffer, D. (2013). CFS Unravelled: One man’s search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for You To Recover. Amazon, Amazon Digital Services LLC 338. While this book is about one particular illness, the research I suggests similar patterns drive many other chronic diseases, including type 1 diabetes, multiple sclerosis, rheumatoid arthritis / disease and others. Dan Neuffer recovered from chronic fatigue syndrome (ME/CFS) by supporting nervous system patterns of regulation through many means, including diet, pacing and going slowly, and other mind body practices. These are sometimes sufficient to recover from some chronic diseases. It has not been enough for me, but it’s a valid, inexpensive, empowering place to start. Here’s a video of Peter’s story of recovery and an intro to Dan’s work. I’ve only read his book (first edition) and have not participated in his online program given that I have my own comprehensive and similar set of tools. I’d love your feedback about this and other resources.
Books for Inspiration
The Brain’s Way of Healing by Dr. Norman Doidge (7)Doidge, N. (2015). The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity Viking Adult offers a series of surprising and inspiring stories of people who have improved, stabilized and / or fully recovered from chronic illnesses and physical symptoms. These include blindness caused by an autoimmune disease, MS, Parkinson’s, chronic pain, traumatic brain injuries and others. Most of the approaches described are not specifically oriented to healing from trauma but address nervous system changes by working with the ability of our brains and neurons to heal and recover, even years or decades after an event. This is known as brain plasticity. Some of these changes appear to be linked to patterns of survival and Doidge has compiled a fascinating theory in Chapter 3 that is consistent with what I’ve learned about trauma and how our bodies learn to perceive threat.
Kitchen Table Wisdom, by Dr. Rachel Naomi Remen is one of my all-time favorite books (8)Remen, R. N. (1996). Kitchen Table Wisdom: Stories that Heal. New York, Riverhead Books. Rachel was diagnosed with severe inflammatory bowel disease (IBD) in her teens and is a story-teller extraordinaire who communicates and educates in the most connecting and moving ways. Each chapter tells a story and offers a pearl of wisdom from experiences she’s had in her own life or that she’s witnessed with patients as a pediatrician and with clients when she became a counselor. Her stories offer insights into the subtle and profound effects of how life experiences can influence our health and help us on our journeys of healing.
Poetry and Stories About Our Human Journeys. David Whyte talks about self-compassion in this DVD (9)Whyte, D. (1992). The Poetry of Self Compassion (DVD), Many Rivers Press and about the road we travel as humans that includes suffering in so many different guises. His description of The Three Marriages – self, relationship and work – applies to living with chronic illness and how we find our way through acceptance, courage, internal explorations and following that which calls to us most deeply (10)Whyte, D. “The Three Marriages: Reimagining Work, Self and Relationship. (top)
Free Downloadable Ebooks
I’ve written a series of free ebooks to help make sense of chronic illness. They are part of my series called The Chronic Illness & Trauma Connection.
Book 1 provides an Overview of the links and research. It includes stories of healing and recovery in asthma, inflammatory bowel disease, chronic fatigue (ME/CFS), autoimmune and other diseases. It also introduces the different types of trauma that affect risk for chronic illness and other health conditions and describes the differences between stress and trauma.
Book 2 explains symptoms commonly seen in both trauma and chronic illness. This can make it easier to recognize whether and how adverse events may be affecting you. Book 3 introduces research explaining how the effects of trauma in chronic illness are not psychological.
Therapies for Chronic Illness
I have incorporated a number of practices and tools into my daily routine following years of working with my chronic illness. These have helped improve my symptoms of chronic fatigue, IBS, and asthma as a result of healing old patterns and reducing the perception of threat in my nervous system.
Working on your own can be really helpful. It’s also free, can be done in your timing and in the place of your choosing.
For some, myself included, it can also be challenging. This is in part because the perception of threat can be quite significant once we delve into it. It’s also because living with a chronic illness can be an intense, scary, stressful and overwhelming experience in and of itself. I have thus found that working with someone who can stay regulated and in the present moment, who can remain calm, curious and mindful, and who is connecting can be of great value in this type of work. There are many therapies for chronic illness and therapists who have a well developed set of skills that are also valuable for helping us heal. (top)
Include the Body II
Symptoms of all kinds represent our body’s intelligent attempts to maximize our survival, so this work is not about getting rid of symptoms as quickly as we can. Rather, it’s about gently finding other and better ways to defuse and unwind these stress responses as well as to develop resources and other, more effective, coping strategies.
Many symptoms are used by the body as a defense mechanism or physiological attempt to keep a lid on things that are or have been overwhelming. This is not because it’s psychosomatic but because symptoms are driven by our nervous systems.
This can look like a prolonged experience of muscle tension that leads to chronic pain or problems with digestion, for example. Or it may also be the way our blood pressures (or blood sugar levels, or heart rates or energy levels) change as they would in states of fight or flight or freeze.
Working with physical symptoms involves listening to the language of our bodies...
Chronic illness resources support the healing of the nervous system and patterns that affect our symptoms. Making time for them is not a frivolous act but one of self love, self compassion and self care.
Chronic illness resources are things that soften my heart. For me, it is an experience that feels gentle. Or kind. Nonjudging. It is a moment that gives me even one iota more capacity to keep going. To feel a little less anxious. To have a little more connection to myself when I’m feeling particularly blue. Or gray. Or irritable.
I have updated this post since first writing it in 2014. We have moved since then and are now just 15 minutes away. We’re in a simpler home as we downsized from a house to a condo with a lovely small yard. I have befriended the new creek and path that I visit here every day, just as I describe below. The resources I introduced here when I first started my blog still feel so good. And so relevant.
Resources have likely been inadequate for those of us who have a chronic illness. They’ve been outnumbered by the more challenging events in our lives.
But resources exist in all kinds of forms. Even now. And while my own illness is chronic fatigue (ME/CFS), these kinds of chronic illness resources are helpful regardless of the chronic health condition you may have.
For some, chronic illness resources come from friends and family, who can be a tremendous source of support. For others it is a beloved animal, such as physician Rachel Naomi Remen who has inflammatory bowel disease, for whom her cat was a best friend. For others of us with chronic illness and other health conditions, it may be something even less complicated, that needs no care. No conversation. That may not even need to be fed or watered.
A resource could be a movie or TV show that breaks through a negative internal dialogue. I personally love romantic comedies where the main character moves successfully through big transition in life, such as Working Girl, Everafter and While you were Sleeping. How to Lose a Guy in 10 Days has long been a favorite too. So are How to Train Your Dragon and Family Man. I have watched them over and over again, sometimes once a year, sometimes every few years, and I love knowing that it’s all going to turn out okay in the end. That is a resource for me.
Books that strike the right cord can really help me feel an itty bit better too, some days. As did the tender evolution of the relationship in The Art of Hearing Heart Beats. Another that gives me hope is Wish You Happy Forever, by Jenny Bowen who founded Half the Sky, an organization helping China change how they take care of their orphaned children. They are making a remarkable difference.
For me, nature is ultimately one of my biggest resources. I can watch it from my living room or my bed, from the chair on the patio, or on a walk. It’s available in all sorts of forms and details and sizes.
Chronic Illness Resources
Resources for those of us living with chronic health conditions are an important part of our journeys. They help balance out the difficulties. And they are part of the pathway to healing. These often involve small joys. Little things that lift my spirits, even a smidge. Simple things that might lift yours, too. This concept supports the idea of indulging in the things that make your heart sing, or make you guffaw, or put a twinkle in your eye.
Because anything that resources us also helps to break and change the patterns that drive our symptoms.
We are designed for resiliency in the face of trauma when there are enough resources – whether that is time, or space, or people or connections. And it’s never too late.
Patterns can change. It may take time and a series of approaches, but making the space for things that are uplifting is a way of changing the way we live with, react to, and feed patterns that may be contributing to our symptoms.
A resource isn”t a fix, necessarily. It’s not quick – although sometimes reading just the right sentence in a book has been enough to completely shift my mood and my physiological state.
But a resource is a support. And sometimes we need to have permission and encouragement to make the time for these things that might seem wasteful, or inefficient; impractical or unproductive. There is a place, and a need, for support in our lives.
Chronic illness resources are things that make you smile. And laugh. Or that break you open and make you cry from appreciation or joy or the tenderness of open-hearted vulnerability.
For me, they include things that warm my heart and make me want to wiggle my toes in pleasure. Or that quiet my soul and help me feel more settled or at peace. More calm. More okay, even if it’s just for a moment.
At times, imagining and picturing the stream in my neighbourhood feeds a place inside of me and leaves me feeling satisfied, rather than craving more. This is a good indication that something is resourcing.
Another one of the qualities of a resource is that sometimes I want to share it with others, precisely because when something opens our hearts, it enables us to connect. With ourselves. And with others.
The Little Stream
I’ve been wanting to introduce you to the Little Stream since I first started thinking I was ready to start my blog. I started paying more attention to it in February.
It’s taken me over a decade to begin to really notice this stream, even though I’ve walked by it every day for years.
We had a flood here in Boulder in September 2013 and the huge upheaval and sense of threat as I watched the little stream rise and approach its banks grabbed my attention. This is often what unexpected and potentially traumatic events do – they bring things into sharp focus.
For about a week I watched as the stream got swollen beyond anything I had ever thought possible. David and I worried about whether our home would be safe (it was) and how it would affect our friends, our neighbors and our community. Many came away unscathed physically, but it was devastating for many in our area, some of whom lost everything. The emotional toll was felt by all of us.
I took pictures of the stream from a bridge on the path during the flood. I watched as it began to recede within days after the rain stopped. The stream recovered and slowly healed. There is new terrain. There are new groupings of branches on the banks and in the stream.
I started noticing the stream on my walks after that. At first, I just wanted to see it recover.
With time, I began to notice the beauty and a sweetness I’d never paid attention to before.
I began to develop a relationship with it, and as we tend to do when we begin to feel a connection to something, I gave it a name. Pretty simple, just “Little Stream.” But it feels affectionate.
I found a place to sit. Pulled up a log from some debris on the side and made it my own. I started stopping by regularly. I began to notice the little things that change every day – the warblers migrating through, dipping in it for baths. Only there for one day. No wonder I’d never seen them before.
There was also a mallard pair that I managed to see going up or down the stream almost every day this spring. I’d seen a pair occasionally in previous years.
I even gave them names as I began to look forward to seeing them every day. The male reminded me of one of my uncles as he proudly surveyed his territory, zipping down the steam one day when the water was high and fast. I started thinking of him as “M” for my uncle, who died 9 years ago but remains in our hearts and minds.
The female seemed independent and he often did more watching before joining her in feeding below the surface. I think of her as a Sarah.
Watching with curiosity, I noticed that they ate plants on the sides of the stream and in the shallow bottom. On looking more closely, I learned that their meals left beautiful little red roots exposed where the moss had been removed for their dinners.
Each of these little discoveries has become a part of the resource that this Little Stream has unexpectedly offered me. As the relationship has developed, the little things have become part of our “conversation.” I step off the path and peak my head over even on days where I don’t sit there. I track the water levels. I wonder that it must have rained in the mountains or that it’s been warm and there is extra melt happening on days when the water levels are higher.
I now sit on my log for a minute, or 10, or more almost every day. I listen to the burbling as it flows by my little spot. There is a tiny 6-inch drop over an old wooden branch and I’ve come to call this Little Falls.
The scenery from Little Falls has evolved since winter. The photo below was taken May 3rd.
Early Spring Greens Emerging
The first leaves and grasses were vibrant and undaunted throughout the slow gentle spring this year. I took the photo below from the same spot on my log at Little Falls on May 19th.
First Leaves and Dappled Sunlight
And now, in July, the lush greenery hides me and makes my little seat a private spot that is no longer visible to those who pass by on the paths around me. The bridge is no longer visible either.
The Lush Greens of Summer
Sitting on my log, listening to the murmuring as the water flows over Little Falls, soothes me.
Even as I write this post and feel the pull this morning of the wish that some things were different, describing it brings a sense of comfort.
Some days, sitting there helps me to slow down.
As it did when I sat at “the birthing tree” about 20 yards upstream from Little Falls to tape my video introduction to this blog in May.
On other days, it is more like a friend that keeps me company. As I wrestle with anxiety. Or feel particularly tired. Or have a head full of creative ideas and feel too overwhelmed or excited to stop for long.
Sitting there reminds me of how neutral Nature can be. Things are just what they are.
Neither good nor bad.
Big events come. Big changes happen. Big events go.
And Nature adapts.
The Little Stream just keeps going. And its companions on the stream banks accompany it along the way.
Even the broken cattail regrows.
And comes back with two stems rather than one.
I want to find my inner abilities to adapt too.
To come back stronger, greener, more vibrant than before.
And sometimes to be able to look at my life and simply know that it just is what it is.
Neither good nor bad.
With self-compassion and avoidance of judgement. Remember that I, too, am just a part of Nature.
Doing what I can with what I have, and burbling down my path. Not good. Not bad.
In this 6th post of my discovery series, I review 25 years of studies examining whether stress, trauma and adverse events affect risk for T1D. The findings support the belief held by many that serious life events increase risk for type 1 diabetes (T1D). Whether you have T1D or a different chronic illness the research may help you make sense of why and how you developed a chronic disease.
In the first four posts of this series I introduced how this is not because type 1 diabetes or other diseases that are affected by adverse events are psychological. The emerging science shows how life experiences shape nervous systems patterns of regulation early in life that affect long-term health. Early experiences also alter genes to influence how they are expressed.
In the previous post, I described the 2000 year history of suspected links between stress, trauma and type 1 diabetes and why these links were (and still are) often dismissed. These same reasons apply to many other chronic illnesses, including my own (I have chronic fatigue aka ME/CFS). The last post offers insights into why the relationship between trauma and type 1 diabetes is not common knowledge despite increasingly sophisticated studies supporting the link.
The first 2 reasons trauma gets dismissed were addressed in the last post.
Today’s post begins to address the other 5.
Top Reasons Trauma is Dismissed
Belief: T1D must be purely genetic. The Research: Genes that predispose us to risk of developing T1D do not express themselves in isolation. They must interact with the environment over time in order to manifest the disease (1)Pociot, F. and A. Lernmark (2016). “Genetic risk factors for type 1 diabetes.” Lancet387(10035): 2331-2339, (2)Knip, M., et al. (2005). “Environmental triggers and determinants of type 1 diabetes.” Diabetes 54 Suppl 2: S125-136.
Belief: All effects of trauma are psychological, so it cannot be a risk factor for T1D. The Research: This view of out of date (3)McFarlane, A. C., et al. (2017). “The Need to Take a Staging Approach to the Biological Mechanisms of PTSD and its Treatment.” Curr Psychiatry Rep 19(2): 10, (4)McFarlane, A. C. (2017). “Post-traumatic stress disorder is a systemic illness, not a mental disorder: is Cartesian dualism dead?” Med J Aust 206(6): 248-249, (5)Baldwin, D. V. (2013). “Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders.” Neurosci Biobehav Rev 37(8): 1549-1566. Trauma has many effects, including on physiology, biology, the HPA (hypothalamic-pituitary-adrenal) axis, and nervous system regulation, among others (6)Yehuda, R., et al. (2015). “Post-traumatic stress disorder.” Nature Reviews Disease Primers October: 150-157, (7)Shonkoff, J. P., et al. (2012). “The lifelong effects of early childhood adversity and toxic stress.” Pediatrics 129(1): e232-246.
War did not increase rates of diabetes, so trauma cannot be a risk factor.
Adverse events are common. Most people do not develop T1D afterwards.
Worker’s compensation may incite false or exaggerated links to trauma.
Cause of T1D involves only the specific organ of the pancreas.
The role of trauma makes no sense if diabetes begins too long after exposure.
In this post I share some of the first studies I discovered when I started asking the question of whether serious life events increase risk for type 1 diabetes. I have since uncovered similar kinds of studies (and findings) for many other chronic illness.
This post is still relevant whether or not you have T1D (or ME/CFS, asthma, fibromyalgia, MS or some other chronic illness). It introduces the volume of research that supports the link between adverse life events and risk for long term health conditions. It also gives you a peek into the role of the nervous system and patterns seen in many other chronic diseases.
I will share another set of even more recent, powerful studies in the following post, as they were done differently and there is too much to include here.
This post also introduces the adverse childhood experiences (ACE) studies. The ACE studies represent a remarkable body of research outside of T1D showing that serious life events and trauma increase risk for chronic illness and other long-term health conditions. The ACE study article finding an increased risk for autoimmune diseases such as T1D was not published until 2009 so I will tell you about that particular publication in the next post.
Just as it took me a while to recognize my own risk factors among the subtle adverse experiences in my own prenatal life, birth and infancy (introduced in Post #1 and #2 of this series), I didn’t initially connect the dots with the types of serious life events I introduce here either. I’ve been through events similar to those I will describe but, like so many of us, I was slow to realize that these seemingly “ordinary” events had 1) happened to me and 2) could have in fact influenced my health.
We have our notions of what serious life events consist of – and it can take time, introspection and validation from others as well as from seeing the links to our own symptoms to change these views.
Why Care if Trauma Affects Risk?
As I’ve referenced in Post #2, the insights presented here offer potential new tools for early detection, prevention and even treatment of chronic illness such as T1D and many other diseases, including my own. This is why it’s so helpful to understand just how much research links trauma as a risk factor for chronic illness and how much evidence is emerging. I’ve created a list of books and therapies for healing the effects of trauma.
Defining Serious Life Events (SLEs)
Researchers in T1D and other chronic diseases have commonly used questionnaires to identify significant life events, whether negative or positive. These questionnaires cover a broad range of events that can be stressful or difficult to cope with or adapt to.
Examples of serious or severe life events (SLEs) evaluated in many of these studies include:
loss of a parent, such as from death or divorce
family chaos, disturbance or conflict
having a parent with a serious mental or physical illness
hospitalization for reasons not related to T1D
being adopted or having been in foster care
having a parent in jail
death of a parent, friend, sibling, or grandparent
serious parental physical or mental illness
new beginnings, such as starting at a new school or beginning a new school year, changing schools, parent beginning work, arrival of a new sibling
indicators of stress or trauma such as problems in school or in maintaining friendships, difficulty going to sleep, behavioral changes, or frequent occurrence of nightmares
Do Serious Life Events Increase Risk for Type 1 Diabetes?
In 1976, the discovery (8)Gale, E. A. (2001). “The discovery of type 1 diabetes.” Diabetes 50(2): 217-226 that our immune systems can attack our own cells to cause autoimmune diseases provided new opportunities for diabetes research.
It made it easier to differentiate between type 1 diabetes, the less common autoimmune form of the disease, which requires insulin and often begins in childhood; and type 2 diabetes, which is often associated with weight gain but not always, and which is increasingly common in children as well.
Studies began to look at whether serious life events increase risk for type 1 diabetes.
Investigators examined nitty gritty details that can be so tricky to identify when measuring whether someone has experienced trauma and whether it has played a role in long-term health. These included whether severity of stressful events, number of exposures, or supportive experiences made a difference in risk.
The focus on type 1 diabetes took many forms.
Some studies involved country-wide assessments, such as the Swedish Childhood Diabetes Study, which documented all cases of T1D in children aged 0-14 through a national registry. Most involved questionnaires, sometimes sent to individuals newly diagnosed in clinics, other times conducted through interviews by phone or in person. Studies also looked for patterns in antibody expression.
Most of the studies I present below used control groups, which involves selecting both participants with T1D and others who are similar, such as by age but who do not have T1D. Cohorts offer a means of comparison.
Do SLEs Trigger Onset of T1D?
Observations in 200 A.D., in the late 1600s, and through the early 1900s (post #5) suggested that stress and trauma could trigger the onset of T1D. Many of the studies first examining whether serious life events increase risk for type 1 diabetes in the period before onset reached similar conclusions.
Researchers found a greater number of SLEs in the year before onset of T1D in 5-9 year olds in Sweden (9)Hagglof, B., et al. (1991). “The Swedish childhood diabetes study: indications of severe psychological stress as a risk factor for type 1 (insulin-dependent) diabetes mellitus in childhood.” Diabetologia 34(8): 579-583, 10-14 year olds in Hungary (10)Soltesz, G., et al. (1994). “Non-genetic risk determinants for type 1 (insulin-dependent) diabetes mellitus in childhood. Hungarian Childhood Diabetes Epidemiology Study Group.” Acta Paediatr 83(7): 730-735, and in kids under 17 years of age in Montreal, Quebec in Canada (11)Siemiatycki, J., et al. (1989). “Case-control study of IDDM.” Diabetes Care 12(3): 209-216. Individuals diagnosed with T1D at older ages also experienced more SLEs in the 12 months before onset in a study in France (12)Vialettes, B., et al. (1989). “Stress antecedents and immune status in recently diagnosed type I (insulindependent) diabetes mellitus.” Diabete Metab 15(1): 45-50 and in the three years before onset in the UK (13)Robinson, N. and J. H. Fuller (1985). “Role of life events and difficulties in the onset of diabetes mellitus.” J Psychosom Res 29(6): 583-591. Participants in the UK study who were diagnosed after age 21 had more total numbers of SLEs than younger individuals.
One particular study, begun in 1992 and 1993, that found no differences in number of SLEs was The Diabetes Incidence Study in Sweden (DISS). Interestingly, the results suggest the opposite of their statement of no link presented in their abstract (14)Littorin, B., et al. (2001). “Family characteristics and life events before the onset of autoimmune type 1 diabetes in young adults: a nationwide study.” Diabetes Care 24(6): 1033-1037.
DISS sent questionnaires to all individuals 15-34 years of age recently diagnosed with T1D in Sweden. Like the Swedish Childhood Study (15)Hagglof, B., et al. (1991). “The Swedish childhood diabetes study: indications of severe psychological stress as a risk factor for type 1 (insulin-dependent) diabetes mellitus in childhood.” Diabetologia 34(8): 579-583, 2 nondiabetic controls were selected for each child with T1D and matched for age and gender. The authors examined whether serious life events increase risk for type 1 diabetes in the 12 months before onset.
Despite stating that no differences existed, DISS results showed that individuals with T1D had much higher rates of serious illnesses, had been more frequently hospitalized for more than a week, and had more often lost one or both grandparents in the year before onset. The participants with T1D had 6 additional SLEs in the 26-question survey that occurred more frequently than in controls. All 9 findings were statistically significant. These included having less success and more unresolved conflicts with spouses.
Being diagnosed with a serious illness such as T1D can be life-threatening and traumatic. Hospitalization can be as well, and can also trigger intense states of helplessness and despair, especially in children.
Hagglof and colleagues (16)Hagglof, B., et al. (1991). “The Swedish childhood diabetes study: indications of severe psychological stress as a risk factor for type 1 (insulin-dependent) diabetes mellitus in childhood.” Diabetologia 34(8): 579-583 removed serious illness and hospitalizations from their Swedish Diabetes Childhood Study questionnaire on discovering that these events were often cited by parents in relation to the diagnosis of T1D. Littorin’s group did not know whether these events were linked to T1D or other illness. The loss of grandparents was a separation additional SLE found to be more common in the T1D group than in controls.
The conflict between the DISS findings and their statement that there are no links is the problem with this study, not their statement of lack of support for SLEs as risk factors.
SLEs and Age of Onset
Hagglof’s study was part of a larger Swedish Childhood Study (17)Dahlquist, G., et al. (1991). “The Swedish Childhood Diabetes Study: a multivariate analysis of risk determinants for diabetes in different age groups.” Diabetologia 34(10): 757-762 looking at multiple additional environmental risk factors for T1D such as diet, infections and vaccines. Each of these factors independently increased risk. Dahlquist and her colleagues summarized their findings
Of all the environmental risk factors examined (diet, vaccine status, infections, stress), psychological stress in the year before diagnosis was the only factor to influence age of onset of T1D, suggesting that it triggered onset.
The early studies in T1D had some problems, including differences in defining SLEs; differences in questions, number of questions, and questionnaires; and because of relatively small numbers. Their findings were supportive, however, of the long-held belief that SLEs could trigger onset of T1D with the added discovery that SLEs could also decrease the age of onset.
The variations in results suggested that the effects of SLE’s were nuanced.
Characteristics of SLEs that Trigger Onset
Some of the findings in the studies mentioned above were of particular interest to me. This was because of what I was learning from research in traumatic stress.
Actual or Threatened SLEs
The Swedish Childhood Study by Hagglof et al (18)Hagglof, B., et al. (1991). “The Swedish childhood diabetes study: indications of severe psychological stress as a risk factor for type 1 (insulin-dependent) diabetes mellitus in childhood.” Diabetologia 34(8): 579-583 noted that the number of SLEs was only significant when both ACTUAL and THREATENED losses were included. In other words, events did not have to be overt, severe, or actually life-threatening to have an impact on health and risk for T1D. Furthermore, these were events that had happened within the family, and not independently to the child. The authors surmised that such SLEs would inevitably be highly stressful for children.
This finding was also consistent with what I was learning about traumatic stress (19)Scaer, R. C. (2001). The body bears the burden: trauma, dissociation, and disease. New York, Haworth Medical, (20)Levine, P. (1997). Waking the Tiger: Healing Trauma. Berkeley, North Atlantic Books, (21)Yehuda, R., et al. (2015). “Post-traumatic stress disorder.” Nature Reviews Disease Primers October: 150-157.
From our understanding of trauma, the effects of SLEs are not so much about specific types of events as much as about how these events are perceived and experienced by an individual. A car accident might feel life-threatening or like a complete shock to one person, for example, but not a big deal for another. Same event, different experiences and effects.
Effect of SLEs Add Up
Robinson and Fuller, who conducted the UK study in 1985 (22)Robinson, N. and J. H. Fuller (1985). “Role of life events and difficulties in the onset of diabetes mellitus.” J Psychosom Res 29(6): 583-591, found that participants more often experienced one or more SLEs (77%) compared with the controls, who consisted of their non-diabetic siblings (31%) and neighbours (15%). They lived through more SLEs in the 3 years before onset as well as more SLEs in the 6 months before onset. In other words, it wasn’t just SLEs in family life or an occasional SLE that triggered onset but an overall greater number of events experienced by each individual.
Research in traumatic stress shows similar results. Soldiers are at greater risk of developing PTSD (post-traumatic stress disorder) if they’ve experienced other events prior to the recognizable event that triggers the onset of symptoms. This includes events from childhood (23)Yehuda, R., et al. (2015). “Post-traumatic stress disorder.” Nature Reviews Disease Primers October: 150-157.
The effects of SLEs, in other words, add up over time.
Mistakenly Dismissing Trauma as a Risk Factor?
In 2004, an occupational physician named Martin Cosgrove reviewed many of the studies mentioned above (24)Cosgrove, M. (2004). “Do stressful life events cause type 1 diabetes?” Occup. Med. 54(4 %U http://occmed.oxfordjournals.org/cgi/content/abstract/54/4/250 %8 June 1, 2004. His review stemmed from the question of whether pensions for injuries should include work-related stress as a potential trigger for T1D. This question has been raised since the advent of worker’s compensation and was a concern of the first world..
Can stress or trauma cause type 1 diabetes? Or trigger onset? Answers are rarely found despite observed links between stress, trauma and type 1 diabetes (T1D) for over 2000 years.
I received an email from Teri in Illinois with this very question while writing this post,
I just read your post [about how trauma is making sense of your chronic illness]. I do not know how I found you, but am so grateful. My Son was diagnosed with Type 1 Diabetes in 2011 at 13 years old. Previous to his diagnosis he had a few situations which made me question over the years, what in the world was going on with him. He also was diagnosed with anxiety at age 4 and I was given information on ADHD/ADD and needed to bring him for testing at that time for an early intervention program, which he did not test “low” enough for.
At the time he was diagnosed, I looked directly at the endocrinologist and asked if this diagnosis could have had anything to do with stress. She said no. Every endo since this time has said no, even though we know full well cortisol levels and stress have affected his blood sugar levels all along and certainly do to this day.
Thank you for confirming there are studies out there for one. But even more so, thank you for sharing your story and putting it in black and white for us. We have known this for years, but it is hard to feel as if you are the only ones who do.
Research in T1D and disciplines as diverse as neurophysiology, nervous system development, brain plasticity, epigenetics, child development, attachment, and traumatic stress suggest the answers to Teri’s second question is Yes, trauma can trigger onset of T1D and Yes, trauma contributes to the cause and development of T1D.
This article is part of my discovery series presenting research I never knew as an MD. It draws from an emerging understanding that life experiences shape long-term health. And it’s not because it’s psychological.
Here I introduce a history of the links between stress, trauma and type 1 diabetes. I also present the top reasons why the belief has been dismissed, starting in the 1940s.
The same reasons are still often given today despite a remarkable amount of research showing that serious life events actually do increase risk. In fact, recent studies show that kids and teens who develop type 1 diabetes have experienced three times more serious life events. The research is still rarely recognized in medical practices, in clinical care and only briefly mentioned as a potential risk factor in recent reviews (Rewers, 2016; Butalia, 2016).
You also find little or no information on stress or trauma as risk factors for type 1 diabetes when searching websites of organizations such as the American Diabetes Association (ADA), the Juvenile Diabetes Research Foundation (JDRF), the International Diabetes Foundation (IDF), Diabetes Forecast, or the Mayo Clinic. Either it’s not mentioned at all, or it is discussed only with respect to the effects of stress on blood sugar levels or the trauma of being diagnosed with T1D (which are also clearly important to recognize).
Today I’ll introduce the reasons the links were once dismissed. I will tell you about old as well as new and emerging research in sequels to this post.
Knowing about the links between stress, trauma and type 1 diabetes suggests that addressing the effects of serious life events, which happen outside of our control, may be helpful.
For example, some of these studies address Teri’s other question regarding whether her son might have been expressing symptoms well before the onset of T1D. Research findings offer insights about whether it might be possible to work with symptoms or with events she was concerned about so they aren’t missed opportunities for prevention, for delaying the onset or in potentially reducing severity.
As I will show in other posts, studies also find that serious life events affect risk for many other chronic diseases, where these questions about whether serious life events can cause chronic illness or trigger onset are just as common – illnesses such as rheumatoid arthritis, asthma and chronic lung disease, type 2 diabetes, heart disease, multiple sclerosis, Parkinson’s, depression, autism, fibromyalgia, and my own, which is ME/CFS (myalgic encephalitis / chronic fatigue syndrome) and many more.
I found my way to the research in type 1 diabetes because I developed a chronic illness myself. This is also how I learned about the effects of life events. That’s what I’ll introduce next. And if you already follow my blog and know my story you can skip to the next section on Stress, Trauma and Type 1 Diabetes.
When I first started exploring the T1D literature, I was experiencing symptoms of fatigue but did not yet realize I was in the initial phases of a debilitating chronic illness that would last for more than 20 years. I was in my early 30s and, after a lifetime of excellent health, I assumed my decreasing capacity to work, exercise and play was simply due to stress.
I had had a busy schedule as an assistant professor of family medicine at the time, and found the hours, responsibilities and demands stressful. I also felt increasing anguish about the limits of what I could offer my patients, especially those who were coming to me for help with their chronic diseases.
When my symptoms worsened despite decreasing my work hours for a year and then taking a 15-month-long sabbatical, it seemed that something much more serious than stress had to be causing my symptoms.
In my time off I had slowed down, started Tai Chi, changed my diet, and also practiced mindfulness and “being in the present moment.” Even though I’d felt much better emotionally, the common perspective that stress affects physical health hadn’t seemed to hold much water in my case.
At the end of my year off I left medicine for good and entered a new field of study, where I was introduced to a completely different way of understanding how life events can affect long-term health.
It changed my world view.
I developed a profound curiosity about whether life experiences could affect risk for chronic illness by altering our physiology, rather than because they influenced our psychology. Perhaps this was why my own health had not improved despite making changes and getting out of the fast lane.
I wondered if chronic illness could be the result of an innate, intelligent process that had somehow gotten “stuck” in the wrong gear.
I started exploring whether links existed between stress, trauma and type 1 diabetes (T1D).
What I learned eventually made sense of why reducing stress was not enough for me to recover. Healing and gradual improvement have instead come from addressing the more complex effects of serious life events and trauma that I never realized I had experienced. That’s part of what I share in the story that Teri referred to when she first emailed me.
My Chronic Illness Guided My Interest in Diabetes Research
All forms of diabetes are characterized by high levels of sugar in the blood but the mechanisms differ.
Type 1 diabetes is the less common, autoimmune form of diabetes. Although it can develop at any age T1D is frequently diagnosed in childhood. Symptoms are caused by the loss of insulin-producing cells in the pancreas and a lack of insulin.
Type 2 diabetes (T2D) results from a decreased ability of the body to utilize insulin, which may be present in large or small quantities. While onset of T2D usually occurs in adulthood, it has become much more common in children. T2D comprises 90% to 95% of all diabetes.
Both types of diabetes have been increasing around the world since the 1950s.
When I was first drawn to learn more about T1D, I didn’t yet have a name for my own symptoms.
I was eventually diagnosed with ME/CFS, which is associated with exhaustion that can be disabling (I eventually became nearly bedridden for 9 months) and linked to an inability to recover following exercise and activity. At one point, even speaking was difficult for me because it left me empty and tired. ME/CFS is also associated with other symptoms such as cognitive difficulties and remains a poorly understood disease for which no diagnostic tests exist.
What little research I could find in the early days of ME/CFS often proposed it was of psychological in origin.
Beyond the fact that this common view was limited, judgmental, and shaming, however, it didn’t feel accurate.
And so I continued with the vastly more abundant research in T1D, motivated by the fact that I kept making discoveries I had never heard of as a doctor.
For example, I had always thought T1D was a genetic disease. As I’ll describe with an example later in this post, this is a common reason links between stress, trauma and type 1 diabetes are dismissed.
But if one identical twin develops T1D the co-twin, who has the same genes, develops T1D less than half the time. And while having a family member with T1D (parent, sibling or relative) increases risk, rates of T1D have been increasing in genetically similar populations. These findings are all characteristics of nongenetic risk factors.
It turns out that at least half of the contribution to risk for T1D comes from the environment.
The reason to be interested in nongenetic risk factors is that, unlike genes, we may have some control over them or be able to treat or prevent or address them.
The environmental factors thought to confer greatest risk for T1D include having older parents and being breastfed for shorter periods.
Other risk factors are less clear, including the role of
lack of sufficient exposure to everyday microbes during immune system development (the hygiene hypothesis)
Risk factors for T1D involve genes only 50% of the time. They include having older parents an being breastfed for shorter periods. The role of infections, cow’s milk, vaccines, toxins and trauma seem to be less clear.
Over the years, the exquisite series of links in the research I unearthed began to make sense of a connection between stress, trauma and type 1 diabetes.
Many of the perspectives I gained also helped make sense of my own experiences leading up to and following the onset of ME/CFS, as well as for asthma I developed in childhood.
I. Stress, Trauma and Type 1 Diabetes: 200 A.D. to the 1940s
The two different types of diabetes have been noted throughout the history of diabetes although a clear distinction was not made until the 1970s. As a result, early views reflect risk for both kinds of diabetes.
In 1679 Dr. Thomas Willis a British physician who added the term “mellitus” to the name because the urine of people with diabetes tasted of honey, stated that “a prolonged sorrow” was an important cause.
In 1948, Harvard trained physician George Daniels wrote about emerging beliefs that there were no links between stress, trauma and type 1 diabetes. He described how this seemed unwarranted, given the large collection of stories:
references to the sudden appearance of diabetes associated with dramatic stress (for example, in a prisoner whose brother, also a prisoner, was shot in his sleep; or in a child after being rescued from drowning; or in a person after begin frightened at the parting of the steering gear of his car in heavy traffic) are scattered through the literature of the last fifty years.
Dr. William Menninger, a psychiatrist and co-founder of The Menninger Clinic, and Harold Wolff, a neurologist, were among the many who agreed with Daniels that trauma was a common trigger for the onset of diabetes (1)Treuting, T. F. (1962). “The role of emotional factors in the etiology and course of diabetes mellitus: a review of the recent literature.” Am J Med Sci: 131/193-147/109, (2)Wolff, H., G. (1959). “Brain and diabetes: the role of the highest integrative functions in disease.” Diabetes 8(5): 358, (3)Robinson, N. and J. H. Fuller (1985). “Role of life events and difficulties in the onset of diabetes mellitus.” J Psychosom Res 29(6): 583-591.
Links Between Stress, Trauma and Type 1 Diabetes Are Abandoned
Dr. Elliott Joslin initially supported the idea that serious life events might be risk factors for T1D.
He was the first medical doctor to specialize in diabetes in the United States and got interested in T1D when his aunt developed the disease. His mother developed type 2 diabetes after he started practice and his approach (low carbs, exercise, good self care) helped her live another 10 years, which was unheard of at the time.
Joslin was a pioneer in the support of patients learning to care for their own diabetes and maintaining tight blood sugar levels as a way to minimize severity and number of long-term complications. He founded the Joslin Center, which still focuses on diabetes research, care and education; created the first diabetes database with the thousands of cases he saw in his 70 years of medical practice; and became the world’s spokesman for diabetes in the mid 1920s.
In his 1943 paper (4)Joslin, E. P. (1943). “The Relation of Trauma to Diabetes.” Ann Surg 117(4): 607-622, Joslin abandoned the theory that trauma could cause diabetes when the severe traumas of war did not increase rates of the illness. His writings echoed the views of many physicians:
“the World War presented an ideal opportunity for the physical and psychic traumatic origin of diabetes both in the combatants and noncombatants and that the disease did not materialize is most significant.
Despite seeing over 50,000 patients with diabetes over the course of his career, Joslin did not believe he ever saw a case where stress or trauma had been the cause except when a patient had experienced a direct blow to the pancreas.
When Joslin heard the case of a child who had developed diabetes after nearly drowning in a pond, trapped under the ice, and who had then been saved by his dog, Joslin stated that he’d had the very same experience as a child. He, too, had nearly drowned beneath the ice and been rescued by his dog. His contention was that neither he – nor his dog – had ever developed diabetes (5)Vague, J., et al. (1969). “[Sugar diabetes and trauma].” Mars Med 106(10): 755-764.
Joslin and others argued that these types of traumas are a normal part of everyday life. Since most people experience similar events but never develop diabetes, they reasoned, such experiences couldn’t really be factors of relevance.
A third reason Joslin and others dismissed the links between stress, trauma and type 1 diabetes stemmed from the finding in 1889 that diabetes could be induced by removing the pancreas. The emerging idea that the nervous system played a role in diabetes through it’s effects on sugar and insulin levels was essentially set aside. The focus on causes of diabetes turned to the specific organ and the insulin-producing cells within.
“This anatomic fact [of the pancreas’ role], in itself, shows how futile the attempt must be to connect bodily trauma with diabetes Joslin (1943).
Another concern about trauma as a risk factor was that diabetes sometimes occurred within hours or days of a stressful event but could also arise weeks, months or even years later. Joslin and others stipulated that if stress and trauma were risk factors, diabetes must begin within a “reasonable” amount of time after such events. Although the reasons for this varying period of delay were not known, the time frame was eventually limited to 1 year between a traumatic event and onset of diabetes for the link to be deemed relevant.
The advent of disability insurance in Europe was a final issue for Joslin, who worried that people would take advantage of it to falsely or excessively claim that a traum
atic event had caused their diabetes in order to receive compensation.
Ultimately, Joslin was among a number of physicians who agreed that trauma might activate or accelerate an underlying process of diabetes in those already predisposed (such as due to genetic factors), but that trauma was not a cause.
During this period in the mid 1900s, physicians in other specialties were also considering trauma to be a potential risk factor for multiple sclerosis and ALS (6)Harris, W. (1933). “The traumatic factor in organic nervous disease.” British Medical Journal 2: 955-960. Like Joslin, however, many began to dismiss the link. Grimberg, a..
The research presented in the past 3 posts taught me that stressors during pregnancy, birth and infancy are risk factors for chronic illness such as type 1 diabetes and asthma. And that my mother and I had experienced similar stressors.
I learned that distress during this early period of our lives and the separation of mothers and babies at birth affects risk for other chronic diseases too. These include high blood pressure and cholesterol, obesity, insulin resistance and type 2 diabetes. Collectively these are referred to as the metabolic syndrome or “Syndrome X” (see Fetal Origins of Adult Disease).
These discoveries suggested that the same kinds of events in my own prenatal life, birth and infancy were risk factors for my asthma, which started when I was 5 or 6 years old and continued into adulthood, although in a milder form.
These findings made me wonder whether my early experiences could have also affected my risk of developing ME/CFS (myalgic encephalitis / chronic fatigue syndrome), which didn’t start until I was in my 30s. I eventually came across a study suggesting that similar events might indeed play a role in risk for chronic fatigue syndrome (Dietert, 2008).
Perhaps the most life-changing insight in my initial explorations of the research, however, was that helping mothers heal from the effects of these rarely recognized adverse life events improved and often cured their children’s asthma (Madrid, 2005). This was especially true when children were less than 9 years old.
It made me wonder whether similar treatment could improve, cure or prevent type 1 diabetes in kids given that they had the same kinds of risk factors.
Or whether similar approaches could help adults with T1D, asthma or other chronic illnesses, myself included.
I eventually came across research suggesting a fascinating explanation for how early risk factors for chronic illness appear to exert their effects – as well as a potential insight into how treating a mom can help her child’s asthma.
Research in the field of epigenetics is showing us that maternal experiences and behaviors alter her baby’s genes (here’s one of my favorite articles about this finding, by journalist Dan Hurley in Discover magazine, June 2015, who also has type 1 diabetes).
It wasn’t the genes themselves that changed as a result of life experiences however. It was the way genes functioned.
The particular genes identified made babies more sensitive to stress. In other words, early adverse experiences increased perceptions of threat in a baby’s nervous system. There are more studies
It turned out that such changes can last a lifetime.
And they can affect a mother’s grandchildren and great grandchildren.
Interestingly, the study Dan Hurley described also showed that epigenetic changes, which stem from small chemicals that attach to genes and alter their expression, can sometimes be reversed.
This is what I suspect happened with Tony Madrid’s work with moms and the effect on their kids. Stressful events changed mothers’ natural capacities to feel love and bond with their babies. This affected the health, genes and physiology of their babies. When mothers healed, the effects of their recoveries reversed these changes in their children.
More research has emerged since my own first discoveries. Pediatrician Jack Shonkoff, Director of Harvard’s Center on the Developing Child, writes eloquently about how there is now “strong scientific consensus” that early experiences interact with our biology, genes and physiology to shape long-term health and that epigenetics is helping make sense of these new perspectrives (1)Shonkoff, J. P., et al. (2012). “The lifelong effects of early childhood adversity and toxic stress.” Pediatrics 129(1): e232-246; p. 235.
Upcoming Posts: Are Stress and Trauma in Childhood Potential Risk Factors for Chronic Illness?
From what I learned about early risk factors for chronic disease, I wondered whether I, like the little rat pups in Michael Meaney and Moshe Szyf et al’s study described by Dan Hurley in Discover, had internalized perceptions of threat that were affecting my health.
Maybe I, too, was experiencing the effects of early life events and altered genes as risk factors for my chronic fatigue syndrome.
Given what Tony Madrid had discovered and then reproduced in his asthma studies, I wondered whether I could heal as well. Even though I’m an adult.
I decided to work with my health from these perspectives and to continue my research explorations.
I found another set of intriguing studies in type 1 diabetes as I scoured the stacks for the articles presented in the initial posts of the series.
Some of these studies were looking at whether stress in childhood is a risk factor for type 1 diabetes.
In the next part of the series I’ll share what I learned next. And I’ll tell you what it taught me about events from my own childhood that could have contributed further to my risk for ME/CFS and that I’d never considered to be anything other than normal.
Want to read about these early risk factors for chronic illness from the beginning? Here’s the intro post about type 1 diabetes, and post 2 on asthma. Post 3 describes how early life events affect genes. For an overview of what I learned in the past 15+ years here’s a summary. Or you can download my free ebook overview. My personal story gives you an idea of what I’ve learned and how it makes sense of my chronic illness. If you’re thinking about working with symptoms from these perspectives here’s a list of therapies.
I’ve been in a fatigue flare for the past 6 months following the death of my 90 year old aunt, which stirred up some grief along with old patterns of depression. I had a rich last visit with her and my cousins but she left a hole in my family. The old guard – the generation that has been the core that keeps our extended family in touch – is starting to hand over the baton. The events stirred up old patterns and I’ve spent most of my emotional and physical energy working through this latest layer. It’s been rewarding. I’ve been writing less but it felt good to write today’s post. I open up about my history of having lived with both ME/CFS in the past 20 years and depression in the first 20. I also describe the 5 types of trauma I discovered in my own history that I never realized I’d experienced, and how understanding trauma has shaped how I think. It’s been a remarkably empowering journey even if the pace of recovery has been slow and the extent to which healing is possible remain unknown. I hope something in this post is helpful to you. And thank you so much for your enthusiasm and encouragement to keep doing this work.
I never realized that I’d experienced trauma until I trained as a trauma therapist and started discovering how adverse life experiences affect risk for chronic illness. Understanding trauma made sense not only of my experience with ME/CFS but in studies I discovered for many other chronic diseases, including type 1 diabetes, asthma, MS, rheumatoid arthritis and others. It has helped me begin to heal and changed the direction of my life in the best possible way. This is my story of how it started and how I have learned to relate to my health condition.
The Short Story
My ME/CFS (myalgic encephalitis / chronic fatigue syndrome) started 20 years ago when I was in my early 30s and I have been disabled by it. My symptoms worsened slowly over 10 years and at my lowest I got worse from activities such as sitting, standing, taking a shower, or talking. I spent most of 2009 either in bed or on a little mattress in my living room during the day. What I learned after leaving my career as a family doctor, got a Master’s degree in somatic psychology and started exploring the research was that adverse life experiences and trauma are risk factors for chronic diseases of all kinds. The science is starting to explain how it’s not psychosomatic or all in our heads but because trauma affects our nervous systems, immune systems and our genes. These effects can take years, decades or even generations to manifest as symptoms and there are certain characteristics I’ve started to see across a wide spectrum of diseases.
The insights have helped me begin to heal. I’m not yet fully recovered or back to work but now take two walks a day, can run errands or meet with a friend most days, and can also travel a little bit. I still pace myself, take naps and experience flares on occasion, but I don’t dip back down to the “death-like” state or spend days in bed anymore. I bounce back more quickly, am no longer an invalid and the possibility of full recovery does not seem like a fantasy anymore.
I share the research on this website and update posts from time to time with more studies. This perspective offers insights into potential treatment and prevention of chronic illness and mental health conditions and is starting to be recognized in some medical environments.
The Detailed Version
My Onset of Chronic Fatigue
I started having bouts of fatigue in the late 1990s when I was in my early 30s. They lasted a few days at a time and left me so tired I didn’t want to roll over in bed at night. I was skiing, bicycling and working 60-80 hours a week as a family doctor and called these episodes “fatigue attacks” because they came out of nowhere and disappeared just as quickly. I could push through and recover by spending time in bed on weekends and when I felt healthy again in between episodes, it seemed as though all was normal.
Around that time I received a letter from an aunt who had finally received a diagnosis for her own disturbing symptoms, which included fatigue. The name of her disease was “CFIDS” for Chronic Fatigue Immune Dysfunction and the photocopies she sent sounded intense, scary and complex. I still seemed really healthy apart from these occasional, weird “attacks” and I had no idea I was in the early phases of developing the same chronic illness, which is now called ME/CFS for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Her twin sister was later diagnosed with ME/CFS as well. The cause and treatment remain unknown.
As my symptoms gradually worsened and the fatigue attacks became more frequent, I felt bewildered. I’d been physically as healthy as a horse my whole life other than asthma, which was mild. I didn’t have any obvious causes for fatigue such as low thyroid, high blood sugar levels or diabetes, or anemia. Even the depression I’d had most of life had lifted. I had not recently been sick with a significant infection. I never had symptoms of a tick borne disease.
In 1995 I had finally attained my goal of becoming a faculty member and teaching family medicine. Around the onset of my fatigue a few years later, however, I was feeling conflicted about my work hours, the short time I had with patients, and how little I could offer anyone with chronic or debilitating diseases because there simply were (are) no cures.
I figured my fatigue was stress related.
So I ate in a healthy way, saw a rolfer and did psychotherapy, slowed down and worked part time for a year, took a second year to stop working and relax more fully, and then changed careers altogether. My fatigue progressed despite these changes. It increased from intermittent periods of exhaustion between periods of normal health where I could still bike, ski, windsurf, hike and work – to a steady state of perpetual exhaustion that felt “death-like.” I eventually got to the point where I had to lay on my bed for a while after taking a shower and schedule rest periods between work hours because I was completely spent all of the time.
In 2009 I had difficulty working even 1o to 15 hours a week and applied for disability. It was stressful and scary to watch my health deteriorate despite everything I was doing. Within a week of stopping work, the years of pushing through caught up with me and I became almost completely bed-ridden for 9 months. I had trouble sitting up, standing, or walking for more than a few minutes at a time. Talking, especially on the phone, was exhausting as was taking a shower or drying my hair. I hired someone to deliver my groceries and cook for me.
The course of my disease has reversed since 2009. I take 30 minute walks twice a day, can fly to visit family on occasion, am able to run errands most days, and can take care of myself including getting groceries and cooking. I can even occasionally attend a workshop or a wedding for a few hours without noticeable payback. I still have flares but I now have a context for understanding my symptoms and flares, as well as good tools. I’m not yet back to work but the possibility seems more real now than it ever has before. I developed symptoms of food intolerances and irritable bowel syndrome (IBS) over 10 years ago that have yet to stabilize but they are worsening at a slower pace now and there are occasional periods of improvement.
While alternative health approaches have been supportive (acupuncture, homeopathy, making significant dietary changes, energy medicine, intuitive healers and more) nothing has been as helpful or made as big a difference as understanding trauma in a way I never got as an MD.
The Aha Moment and a Change of Perspective
After taking a year off from medicine I followed my sense that the body is wise and that symptoms may represent an intelligent process that has something to convey. I retrained as a somatic psychotherapist at Naropa University and learned how to listen to the body’s language, to help people regulate their nervous systems and to follow symptoms like a trail of bread crumbs that guide the process of healing.
The aha moment that lead me to a different way of thinking about chronic illness came from one of my first classes. We were learning how emotional symptoms that are overwhelming in some way can interfere with our natural capacities to heal. It started with an example from the director of my program, Christine Caldwell Ph.D. (1)Caldwell, C. (1996). Getting Our Bodies Back: Recovery, healing, and transformation through body-centered psychotherapy, Shambhala. She had asked a client who had a habit of wiping her hands across her face during therapy, if she could slow the movement down and be curious. Together, they had gently watched for any feelings, images or sensations that might arose when she did so and it had lead to an unexpected realization and shift.
In paying attention to the movement she had not been aware she even used, the client had remembered a moment from childhood. She had been at her mother’s funeral when her father had sharply ordered her to, “wipe those tears off your face.” She had come to therapy decades later. Her natural process of grieving, which is a way our minds and bodies recover from overwhelming events such as the loss of a parent, had been interrupted. And shutting off her grief had lead to unrecognized pain with no remembered cause. She cried and feeling the grief for the next two sessions she went from smoking 2 packs a day to 1/2 a pack. I learned that habits such as smoking, alcohol and drug abuse, overwork, overeating and other addictions are often a form of medicating ourselves from pain we have been unable to feel, resolve or escape. This kind of approach to healing can mobilize something inside of us that has gotten shut down.
When I wrote the paper for my class (2)Mead, V. (1999). Body Centered Theories of Addiction. Naropa University, Paper written in Somatic Psychology Masters Level Program, for class on “Theories of Somatic Psychology” (Christine Caldwell). Boulder, Colorado, I mused about whether similar experiences could interrupt physiological pathways to affect risk for chronic illness. Blood pressure, heart rate and blood sugar levels, for example, increase naturally with activity and return to baseline during rest and recovery. Could such cycles be interrupted? Could it happen in a similar way to the way grief had been interrupted in my teacher’s client? And if so, what other kinds of events could lead to shutting down of physiological cycles?
That’s when I started to learn about trauma.
As a doctor, understanding trauma meant treating physical wounds and broken bones that resulted from car accidents, violence, falls and other events, which medicine and surgery can so often fix. I thought of trauma as something that happened to war veterans, which was relevant to the field of mental health but not something I had been given tools to work with.
I had never considered the emotional side of trauma.
Researching the Role of Trauma in Chronic Illness
I became intensely curious as I started my explorations. I wondered whether the research literature would show trauma to be a risk factor for any chronic diseases. Were adverse life experiences more common in people who developed a chronic illness? Were there particular types of trauma that affected risk? How did one know if trauma had played a role? Were there triggers as there are in PTSD?
I started my research with type 1 diabetes. Using my skills from medical school to search the literature, I found studies that changed my path, my life, and eventually my health.
What I discovered was that scientists and physicians around the world were independently exploring pieces of the puzzle for their particular disease of interest and in their specific field of study. There were studies published by small research groups here and university teams there; individuals asking one question in the department of epidemiology in one country, and other teams asking questions from the perspectives of child development or neurophysiology in another. I discovered investigators realizing that prenatal stress increased risk for type 1 diabetes, others finding similar risk factors for asthma who stumbled on a cure by treating moms for the traumas and stresses experienced in pregnancy, and epigenetic biologists realizing that mothering behaviors affect genes during very specific and short windows of time in early life to affect how our bodies respond to stress throughout our lives and for multiple generations.
I was dumfounded.
Sometimes the results showed no increased risk from trauma. But mostly they did. And no one was putting it all together at the time.
Understanding trauma based on the literature and my training to learn how to heal its effects gave me a huge context from which to begin to synthesize and understand these differing results.
I started to see patterns. And I was captivated by the wealth of information available.
What I learned about trauma started shedding a new light on everything I had ever learned about chronic illness.
I didn’t recognize that I’d experienced trauma myself at first, but after I started to understand the nuances, it began to make sense of my own journey with chronic illness too.
This blog is where I write about what I’ve learned about the role of adverse life events, which is a term that better encompasses the kinds of experiences that affect risk for almost every chronic disease I have looked into.
Understanding Trauma In New Ways
I’ve come to a whole new way of understanding trauma in the past 15 years. Here are 7.
2. The Nature of Trauma Includes Ordinary and Extraordinary Events. There are big traumas – which neurologist Robert Scaer refers to as “extraordinary” events – such as abuse, war, surviving hurricanes and other natural disasters; And there are little traumas, or what Scaer refers to as the seemingly mundane, “ordinary” events of everyday life, such as being bullied, moving frequently in childhood, having an accident or undergoing surgery, being fired or harassed or flunking an exam. The loss of a parent and other overwhelming experiences, especially in childhood when we are more vulnerable, can also be traumatic. Trauma is much more commonplace in our own lives than we realize.
3. The Effects of Trauma Go Beyond Mental Health Conditions. The effects of trauma are not limited to PTSD (posttraumatic stress disorder), depression, and anxiety. They also include addictions, which are often unconscious attempts to avoid or alleviate pain or suffering. Trauma affects our capacity to form supportive, nurturing relationships as adults. And trauma also increases risk for chronic physical diseases.
4. It’s Not Psychosomatic, It’s Epigenetic. The perspective that emotional health conditions are caused by emotional experiences while physical health conditions are caused by physical problems comes from a false separation of mind and body (3)Baldwin, D. V. (2013). “Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders.” Neurosci Biobehav Rev 37(8): 1549-1566. Trauma affects our genes and alters the function of the nervous, and immune and other organ systems. Healing trauma can reverse some of these epigenetic changes. When a person with a history of trauma has a chronic illness it’s not psychosomatic or because of “laziness” or a personality problem, but because adverse life events affect our genes.
5. Trauma Arises From Experiences of Helplessness and “Freeze.” Trauma is an experience that interrupts our sense of flow and life energy, our sense of safety, or that shakes our sense of trust in ourselves, in our relationships or in the world we live in. Although fight and flight are hallmarks of both stress and trauma, trauma occurs from experiences in which we feel helpless, overwhelmed or have no control. Such experiences lead to the less recognized survival state of freeze.The freeze state is a brain mechanism’s last resort when fight and flight are not options. Freeze states can feel like we’ve shut down, disconnected, or watched an event as though from far away or in slow motion. These states can leave us feeling numb or hopeless, depressed or “death-like,” among other feelings and sensations. The state of freeze is what interrupts emotional and physiological cycles that are designed to help us to heal.
6. Trauma Symptoms Have an Underlying Intelligence. The freeze response, also sometimes referred to as similar to a state of hibernation or shut down, is an intelligent, protective survival mechanism designed to keep the organism alive when no other options exist. Our bodies default to this mechanism as a last resort even when it means turning off a small part of ourselves, such as repressing the emotion of grief in my teacher’s client. Research shows that it also affects physiological processes, such as blood pressure, heart rate, cortisol and blood sugar levels. I suspect the mechanisms are similar for mental and physical conditions affected by trauma. The research and my personal explorations have lead me to the perspective that symptoms are the result of this intelligent process gone awry. It’s about a tradeoff our brains make in..
Science is beginning to reveal how adverse life experiences affect our health. The Health and Adverse Life Experiences Survey (the HALE Survey) gives you an idea of whether events you’ve experienced may have affected your health. Most of these kinds of events are unrecognized, but once you know what they are it gives you new tools. Later in the post you’ll find books and therapies for healing the effects of adverse life experiences that aren’t well known in medicine despite being well established in other fields. These help to heal the underestimated effects of trauma from overt to subtle, even if it’s an event that happened decades in the past or in your parent’s or grandparents’ lives.
The HALE survey is anonymous, takes about 10 minutes and does not require an email to view the results. Your answers will also help me with my research, offering a glimpse of why some people with a history of trauma develop health problems when others do not.
Please if you have any problems with the survey so I can address any problems.
The HALE Survey Question
The Problem: Not everyone with a health condition has a history of trauma. And not everyone with a history of trauma develops a chronic health condition. A predominant cultural and medical view is that most people who experience trauma have no significant effects or health problems. Another is that the effects of trauma are all psychological. The research shows we underestimate the amount of trauma people experience as well as the different effects trauma can have, such as being a risk factor for chronic illness. This is in part because trauma is much more subtle than we think. So I’m taking a look with this survey.
The Question: “Have people with chronic physical and/or mental health conditions experienced more adverse life experiences or traumatic events than people who are in good health?”
Protective Factors: This survey also looks at support, which can protect from, decrease and delay the effects of trauma.
It’s Not “Psychological” It’s Epigenetic
Health care focuses on emotional causes of emotional health conditions and physical causes of physical health conditions.
As a result, research in trauma generally examines effects of adverse life experiences only on mental health.
There’s a need for a closer look at the role of adverse life experiences in chronic physical illness because life experiences affect our genes and have a wide range of effects on health. It’s about this process of epigenetics rather than about psychology.
Different Types of Trauma
The types of trauma in this survey are rarely recognized in medicine but affect risk for chronic health conditions including chronic illness, mental illness and other problems such as addictions (to work, to substances, to exercise, to food etc).
Take the Survey Even In Great Health
Your answers are especially important if you are in great health and have never had – or have recovered from – a health condition that lasted for more than 3 months.
Most people live through some kind of adverse life experiences as part of being human and not everyone gets sick. Having a good support system can protect us from the effects of trauma or we may develop symptoms at some point because we’ve experienced one trauma too many.
Your answers will help my research and give me a sense of this.
Types of Adverse Life Experiences
Multigenerational Trauma. Therapist Mark Wolynn works with the effects of trauma that happened in our anestors’ lives – events such as World War II and the Holocaust, surviving betrayal, witnessing horror, or a parent who never recovered from the loss of a child or a miscarriage. He describes how multigenerational trauma affects kids and grandkids and how it heals, “Many of us walk around with trauma symptoms we can’t explain. Whether sudden onset or chronic, we have anxieties, depressions or obsessive thoughts we’ve never gotten to the bottom of. We never think to connect our personal issue to what’s happened to our parents or grandparents. We’re now learning that traumas experienced by previous generations can be biologically inherited …” His book “It Didn’t Start With You” is a powerful resource that offers guidelines for healing symptoms even if you do not think there is any history of trauma in your relatives’ lives.
Events in Pregnancy, Birth and Infancy. When mothers have adverse life experiences during pregnancy, when giving birth and in the first year of their children’s lives it can be traumatizing for them (the moms) and it can also affect the long-term health of their babies. This is not a mother’s fault but the result of how adverse experiences affect our nervous systems as well as our kids’. This happens through epigenetics. Examples of difficult events include the death of a loved one during pregnancy or soon after giving birth; exposure to financial stress, divorce or violence; illness and other stress before getting pregnant or in the first year after birth. Premature birth is also a risk factor for poor health later in life. I introduce this field of research and how helping moms recover from traumatic events can help their children recover their health. Columbia University is studying how supporting mothers of premature babies helps moms while also decreasing cognitive and developmental symptoms in their babies. Tony Madrid’s book describes how women can recover from birth trauma and how this work can also heal their children’s asthma. This same approach may be helpful for mothers to try even to support healing in their children even if their kids are adults.
Trauma in Childhood. The adverse childhood experiences (ACE) study looked at 10 specific types of trauma including physical, sexual and emotional abuse and neglect, dysfunction in the household and loss of a parent. These types of adverse life experiences greatly increase risk for chronic health conditions as well as substance abuse and more Other kinds of trauma in childhood, many of which are much more subtle, have also been found to be risk factors for chronic illness (hospitalizations, falls, being bullied, growing up in an unsafe neighbourhood etc). You can find approaches for healing this type of trauma on my Books and Therapies page.
Parent-Child Relationship Trauma. Jennifer Aniston talks about her relationship with her mom who was very critical of her, “I thought I wasn’t smart. I just couldn’t retain anything,” she mused. “Now (after being diagnosed with dyslexia during an eye exam), I had this great discovery. I felt like all of my childhood trauma-dies, tragedies, dramas were explained.” Aniston’s story is an example of the most invisible type of adverse life experience that affects health. It’s the hardest to recognize and easy to explain away because it’s all we knew. Justin Timberlake shares what he discovered about his own trauma as a new parent: “”You go through your life with your own traumas, big and small, and think, ‘It’s not that bad, I have a lot to be thankful for, my parents did the best they could,’”… “But then you have a child of your own, and suddenly it opens all the floodgates, and you’re like, ‘No, no, no! That childhood trauma really did f–k me up!'” You will find approaches for healing this type of trauma on my Books and Therapies page.
Trauma has many effects. Gabor Mate in an interview: “Addiction isn’t the only outcome of trauma. If you look at the Adverse Childhood Experiences Study, it clearly shows that the more trauma there is, the greater the risk for addiction, exponentially so. Of course, there are traumatized people who don’t become addicts. You know what happens to them? They develop depression or anxiety, or they develop autoimmune disease, or any number of other outcomes. Or if they’re fortunate enough and get enough support in life to overcome the trauma, then they might not develop anything at all.”