How I Learned to Care for Myself After Years of Denying My EDS

I first separated from my now ex-wife five years ago. I came back to the United States from Canada, back to the Oregon coast I knew from childhood for an oceanside retreat I thought would be temporary. I started therapy.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It was a rough time. But, I mean, what divorce isn’t?

Not to be flippant about the trauma of divorce, but I don’t want to write about the end of my marriage here. I want to write about what happened after, to my own relationship with chronic illness, Ehlers-Danlos syndrome (EDS).

I was first diagnosed at 10 years old, by chance, when an emergency room doctor recognized my hypermobility, along with shin injuries that required stitches, as manifestations of the disorder. So in that way I was lucky. Others can battle disbelief for decades with doctors who think the severity of their symptoms are simply the exaggerations of “hypochondriac attention-seekers.”

Still, I had a different sort of battle with disbelief.

The self-care I learned in childhood was, shall we say, not the greatest? I integrated the dismissal of my day-to-day illness and chronic pain early on and blamed myself for its manifestations. When I didn’t participate in social events because of exhaustion, I called myself lazy and socially awkward. When I was in intense pain, I tried my best to ignore and push through it.

In other words, I had a flippant disregard for my own reality, which meant the disbelief I battled for decades was not from doctors, whom I avoided entirely, but from myself.

Those of us with chronic illness will recognize the folly of forcing yourself through pain and fatigue. That to accept a chronic illness or disability first requires accepting the validity of its symptoms. Surprisingly, scraping the bottom of the energy barrel to act “normal” doesn’t magically create able-bodied health. It’s only highly effective in exacerbating the illness in the long run.

My ex-wife and I were together for almost 10 years, the entire decade of my 20s. So how I first learned to take care of myself as an adult was formed within the context of that relationship. And my ex-wife was an excellent caretaker: she cooked delicious, gluten-free meals and never once questioned my need to rest with my feet up, never once questioned the degree of my chronic pain.

These were true gifts, these experiences of care. The only problem was when the relationship began to fall apart. Without the balance of her caretaking, I too easily reverted back to my original wiring. When I had flare-ups I fell deeply back into the pattern of telling myself I was too sensitive, was going “crazy,” and would never be able to function again.

To illustrate, I was in therapy for one full year before I mentioned my chronic illness to my therapist. That’s how much I’d pushed it out of my consciousness. I acted as if it didn’t exist and didn’t affect me, despite a myriad of symptoms. I simply blamed myself for fatigue and pain, positioning myself as the one “at fault” for any physical shortcomings. I isolated myself in self-protection, without realizing that no one else’s judgment could be as cutting as my own.

So it was serious emotional work to realize how deeply I’d learned to dismiss myself and why. I needed to find a well of self-care to draw from, and quickly, because my early 30s also saw a major uptick in the severity of my symptoms and pain.

It felt like a life-or-death battle, but I did find that well. I drank myself back to my own reality.

Now at 35 I’ve learned to prioritize my body and emotions, even when it’s inconvenient. I accept that the pain is real and that attending to it is a priority. Now I say no to relationships that leave me feeling drained, which is too high a cost when my energy is so precious. Now I accept that freelancing is my best option health-wise, despite my sadness about letting go of another career.

In other words, I’m kinder and gentler with myself now than I’ve ever been. I accept that my human limitations are not my fault: they just are.

The funny thing is this: the more carefully I attend to myself, doing whatever I can to soothe every quiet warning ache and fever and dizzy spell (or every screaming dislocation and wall of exhaustion), the more it feels like I’m drawing strength from the limitations themselves. They’re a part of me, after all. I can only be myself if I let myself exist, lovingly, within them.

I do my best work and lose myself in my best writing flow when I’m fully sensitive to my chronic illness, not when I’m fighting to pretend it doesn’t exist. Radical self-care, you might call it, that capacity to rest when my body needs to, for however long, without worrying about whether or not I “deserve” it.

So in the oceanic wake of my divorce was an unexpected but positive, lifesaving change in my relationship with Ehlers-Danlos syndrome.