Health

I Won’t Let Chronic Illness Define My Progress

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After years of frustration, I’m taking control in spite of my health

Jean-Luc Bouchard
Photo: Olaf Michalak/EyeEm/Getty Images

Chronic illness, for a while, broke my brain.

I say that not to reduce mental health to something glib and dramatic, but to accurately report how it felt to finally break under the weight of being permanently sick. The whole of my adult life has been marked by illness — from autoimmune diseases and anemia to stomach surgeries, inner ear disorders, and vagus nerve dysfunction. The two most persistently terrible forces in my life are fibromyalgia and arthritis, which have left me off-and-on requiring the use of a cane, injections of immunosuppressors, and drastic lifestyle changes to maintain chronic pain and mobility issues. After years of trying and failing to manage these conditions, I woke up one day with the sensation of having been dropped and shattered.

But my brain didn’t break from sickness itself. Rather, it’s all the things chronic illness carries with it: the stress of handling doctors, insurance, bills, isolation, communicating with friends and family, forgoing things I love, and — more than anything — staring futility, ambiguity, and a lack of progress in the face. The inability to experience any progress, to consistently have to lie to loved ones about feeling better, was what really did me in.

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People have been conditioned to discuss health in terms of progress. We tend to think of pain and illness as the result of an isolated event, and we respond to sickness with wishes of getting better soon. But chronic illness does not move laterally — it can exist in lesser or greater states, but it may never fully improve. The broadness and ambiguity of symptoms, causes, and treatments associated with autoimmune disorders in particular fly in the face of how doctors and patients have been taught to treat illness — like a problem to be definitively solved, rather than a billowing state of being. No matter how goal-oriented a person you are, or how much you desire clean, hard solutions to your problems, chronic illness does not care.

The reality of this does not sit well in my heart. I am someone who lives in the future, planning and dreaming and relentlessly setting goals. I like to make progress, just like everyone else. I am an optimist, I am ambitious, but more than anything I am hungry. Like a lot of people who grew up in a home that left them unhappy, I am hungry for an adulthood that leaves me satisfied.

It wasn’t fair to let chronic illness define the progress I make in my life.

For a few years, chronic illness gripped me so hard that I could only envision satisfaction through escape, and I converted passions and hobbies into medicine to be abused. I read and wrote fiction and played video games and role-playing games not for entertainment, but to be as far out of my skin as possible. I listened to podcasts and audiobooks for hours each day to avoid hearing my own thoughts. I gave every minute of my waking life to distraction through work or distraction through consumption with the hope that I wouldn’t have to face my pain. When this didn’t work, I began to drink excessively to help dull the pain as well as my mind. I drank like someone who no longer anticipated progress.

My hopelessness was warranted, but it wasn’t fair. It wasn’t fair to let chronic illness define the progress I make in my life. It’s true that health defines so much of what I do — it makes it harder or easier for me to be social, to be mobile, to be engaged with the world. It has left me lonely, angry, and afraid for long periods of time, and it has certainly left me feeling stuck. But health only defines the whole of my identity and my progress for as long as I allow it. And this past year, for the first time in my life, I have decided to stop allowing it.

So this isn’t an essay to mourn my illness. This is an essay to celebrate my first full year of sobriety. I’ve conquered 365 days of no drinking, and no matter how you look at it, that’s progress.

Going sober took so much work, and it required so much change to get to a place where I want to treat myself well regardless of the pain. And now, no matter how low I get, I am no longer allowed to deny the progress I’ve made in my lifestyle, my mood, my health, and my pride. Because for the first time maybe ever, I feel a deep, deep pride at having achieved something that was never intended to make me more successful, or more accomplished, or richer, smarter, more talented, or more capable. Rather, going sober was only ever intended to be a gift of kindness to my body, toward which I have always held tremendous ill will.

This kind of pride is new, it is electric, and it satiates some of that hunger I never thought would go away. Over this past year I have made progress despite my health, despite the ambiguity, and in doing so I have also brought some minor relief to my illnesses. Going sober has lessened some of the pain I have from fibromyalgia — not entirely, but noticeably. It has improved some of my digestion problems as well. And while that’s far from enough to claim my illnesses over and done, it is something. It’s something, and that’s so much more than nothing.

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