Learning to Live with Chronic Pain

It’s ironic. I’ve been sick my entire life, but only in the past few months have I really felt chronically ill.

I’m slowly, if not reluctantly, coming to terms with the fact that my sinus issues are chronic. A round of antibiotics and a hot compress every few days may not fix them. For as long as I can remember, I’ve run to the doctor at the smallest sign of illness. Sore throat? Time to drive 35 minutes one way to see my general practitioner. Evidence of respiratory infection landed me in the hospital nine times out of 10. But now, faced with something I cannot immediately address, I find myself …

Well.

I’ve been waiting for my sinuses to clear up, but it’s been months now without much progress, so I’ve been trying to accept things as they are. Heat waves trigger headaches and vertigo. I’ve pretty much lost all sense of smell. I’m tired all the time, which could be the sinus infection, the depression, the anxiety, the allergy shots, the SMA, or all of the above. As I write this, my head is starting to hurt, which means it’s just about time for my hot compress. This is my new normal, and yet, I can’t help but compare my everyday life to what it was before sinusitis — before the headaches, the vertigo, and the neck soreness that hit me at random times throughout the day.

I miss being healthy. I miss waking up without a headache. I miss being able to smell the candles on my desk, my dad cooking dinner upstairs, the metallic scent of my mom’s hairspray. Chronic illness sucks, and I’m straight-up failing this whole “acceptance” business (ironic, because I wrote a paper on chronic pain and acceptance and commitment therapy last semester). I guess I’m struggling to integrate “chronically ill” with all the other aspects of my identity, such as “disabled,” “writer,” and “future mental health counselor.”

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But I’m trying. Pain is now a feature of the landscape, like the sun or the sleepy green hills that surround my hometown. I wake and it’s there. I play Dungeons & Dragons with my friends, binge season two of “Jane the Virgin,” work on my book, and it’s there. Even on good days, with minimal vertigo and no headaches, the pain is there, waiting to flare up. It is my new, constant, infuriating companion, and I’m tired of hating it. So, I’m trying to invite it into my space — my room, with its plants and poetry books and blankets scattered everywhere — and, hopefully, with time, sit with it. It does its thing and I do mine.

People in my life will attest to the fact that I have been doing less than great when it comes to “accepting” and “committing.” I’m angry with my body. We’ve been through enough the past few years, yet here we are, nursing something new. It is, I think, an issue of entitlement. I want a pain-free summer and feel I deserve one and that I’ve earned it. Once or twice a week, I get lost in medical anxiety and spend the next few days wading through uncertainty. I feel unbalanced, let down, a little more than raw.

I keep telling myself that pain doesn’t necessitate an ending. Growing up, I internalized that sick was the worst thing I could be; health was an achievement to laud. But, in reality, pain is just that: pain. I fight my body for a while, upset with its weaknesses, what I consider to be its flaws. But at the end of the day, the only way to move forward is to pick up the pain, to sling it around my shoulders, to carry it with me. So, I do. I carry it with me. Life is a little heavier now, but no less worth the burden.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.