A Blog about living and working with chronic illness and difficult health challenges. This page focuses on wide ranging issues facing people living with chronic disease, including unpredictable, debilitating, invisible. I live this life and coach those wanting to make significant changes
I was surprised when my client started our call saying she was too upset to talk about what she’d planned. She’s typically matter of fact about most things but that day she sounded like a puddle. She was overwhelmed since she woke to the news of the mass shooting of Muslims at a Mosque in New Zealand. “I can’t believe the world is such a painful place”. She lives with chronic and debilitating pain but she found this mass expression of raw pain devastating.
Is there anyone who can say they’ve never experienced pain? It’s the thread that binds us as human beings. It’s also a highly relative and subjective feeling – and that is what makes it such a tricky issue. I’ve lived with significant pain in my feet and my back for decades. I can pinpoint and describe the sensations so it seems like the other person gets it. But when I have to describe how bad it is, such as by using the pain scale, the pain becomes a moving target. When I explain what it’s preventing me from doing, there’s some part of me that’s thinking, but I could try harder. I want to be triumphant with my illnesses, not a slacker. But there are days that my pain almost takes charge.
In a recent
New York Times opinion piece, Is
Pain a Sensation or an Emotion?
Dr. Haider Warraich wrote, “. . . the mind
does play a pivotal role in the experience of pain. After a pain signal reaches
the brain, it undergoes significant reprocessing. How much something hurts can vary depending
on factors like your expectations, your mood and how distracted you are. Just
seeing someone else in pain can make you feel worse, too. … pain is contagious
moments when the pain in my feet is so raw, it feels like they’re burning and I
want to jump out of my skin. I’ve
learned it’s worse when I’m lying in bed and it becomes all I can focus on. I’ve also learned distraction helps me from
losing my mind but it doesn’t get rid of the pain.
It’s safe to say that anyone who
survived the attack at the Mosque will experience emotional and physical pain
but the degree of pain each experiences and the degree to which it impacts
their lives will vary.
“… While the expression that suffering is
“all in your head” is too often used to diminish others’ agony, the mind does
play a pivotal role in the experience of pain. After a pain signal reaches the
brain, it undergoes significant reprocessing. Objectively, there is no doubt that
illnesses and injuries can cause immense suffering. The question is how severe
that suffering is, and how long it lasts. …. There is so much that we still
don’t understand about the fundamental biology of pain, and that needs to
So what can we, those who live in
chronic pain, do about this conundrum? I’m not a medical doctor, a researcher
or any healthcare practitioner. But I believe
it’s possible to develop the capacity to identify where change is possible and
to develop the skills to engage so it doesn’t destroy you.
In his seminal book on pain, Full
Catastrophe Living, Dr. Jon Kabat-Zinn
wrote, “You change your relationship to the pain by opening up to it
and paying attention to it. You “put out the welcome mat.” If you distinguish between pain and
suffering, change is possible. As the saying goes, “Pain is inevitable;
suffering is optional.”
When physical or emotional pain are
acute, there is typically a healing process to wellness. But when that pain slides into the chronic,
the healing process gets messy. The mind
and the body are in a dance with each other and we’re trying to figure out how
to cut in. I’m not saying it’s easy to
change your response to pain, physical or mental. It’s a journey, a process of playing with
different techniques , see what works and what sticks for you.
Taking a break after more than a decade of writing this blog had nothing to do with the activity itself. I enjoy writing and between my clients’ stories and my own, there’s never a loss for what to write about.
And let’s face it, I love hearing from you and getting your feedback.
So what happened? Over the past few years, I’d gradually been increasing the amount of time I spent on non-paid work both as a patient advocate and in social justice community organizing. Then early last winter, significantly debilitating gastric symptoms were wearing me out and my energy took a nose-dive. I was feeling the pressure. Living with unpredictable and often debilitating health is a balancing act. I see my energy as a zero-sum game. Increasing energy output in one area impacts what’s available for other parts.
How do you walk this tightrope? Are you confident you can? I put my focus on what seems to work for me and then I practice it. Practicing these fundamentals even when I’m not struggling with my health is my only hope to be able to Keep Working,Girlfriend! Here’s what I’m talking about.
Fundamental 1:Manage my time thoughtfully so I can take care of my health, when I need to.
There are few things I hate more than disappointing others – – and myself – – because my body is screaming, NO! When my health became worse, it was clear that if I wanted to keep working, both paid and unpaid, I needed a reset in my priorities and a new workplan.. Knowing where I want to put my energy and why decreases the draining 2nd guessing thoughts that bubble up and deplete me even more.
Fundamental 2: Action with intention maximizes my resources and minimizes the need to make gut wrenching decisions on the fly with little space for clear thought.
This meant identifying how much time I needed to sustain my business and what I needed to be effective in my volunteer efforts. I wouldn’t cut back my client work or several research projects but I could put the blog and some other ‘non essential to my business’ activities on hold for 6 months.
Last April, while letting the dog out, something I’d done a thousand time before, I fell over a threshold and dislocated my ankle, breaking it in several places. It was a mess.
I’ve lived with multiple chronic illnesses for 4 decades and broken more bones than I can count. But on that beautiful, blue sky spring day, after landing hard on my back, I looked at my splayed right ankle and knew this wasn’t going to be like anything I’d been through before (Boston Celtics player, Gordon Hayward, knows what I’m talking about). After the ER Doc did a brilliant job of massaging the ankle bone into place with no pain (drugs helped!), there was a week of immobility so the trauma could heal enough to tolerate surgery. Post surgery, the surgeon told me no weight bearing on my ankle for 8 more weeks! I could not process what that meant.
So I did the only thing I could. I focused on being in each and every very strange moment of my current reality. The only intention I could muster was to not lose my mind.
Fundamental 3:When you’re sailing without a rudder, dig deep to find what resources you’ve got … and use them.
Confined to my bedroom because a flight of dangerous stairs kept me from the rest of our house, I relied on others completely to help me into a wheelchair, bring me food and enable me to manage my activities of daily living. Fortunately, this happened in 2018 so technology gave me a level of access to life as I’d known it. Our bedroom was my office and our dining room where friends and family generously brought meals and visited. But my spirit was fed by the colleagues who came to me for meetings and the work I could do with my computer. Client calls and meeting conference calls were my lifeline to sanity as each day dragged into weeks and months. Eight weeks post surgery, with the cast off and partial weight bearing, I had 6 weeks of rehab in an awful, bulky boot and then more rehab to learn to walk on it again. Eight months later, I look recovered although I’m still working in physical therapy to get back to as much use of my right foot as possible and my ankle is still very cranky. The good news is that I no longer experience panic attacks that I might fall while walking.
My learning? It’s always about resilience. All the years of learning to live with the unpredictable, responding to the punches to stay upright, and coming to terms with what came my way gave me the strength to get through this. I relied on my resilience and used my resources to stay afloat. Chronic or acute illness, injury, trauma aren’t easy games to play in and we have to keep honing the fundamentals.