Headache? Brain tumor? Unpacking the roots of illness anxiety

As a lifelong proponent of therapy, I go through phases. Sometimes I don’t need the support. Sometimes I do, so I go through the whole rigamarole of finding a practitioner I vibe with.

It’s not a fun process. I know so much about therapy that I am, in a word, picky. I know what I want, and because I’ve been lucky enough to have some really great therapists, I don’t settle for just anyone.

I’m particularly picky when it comes to my SMA. I don’t expect them to know about the disease — it is, after all, rare — but if they’re awkward about the subject, that’s a pretty big red flag. Therapy is my time; I’m not there to educate people, even if they’re well-meaning, about living with a disability. If I don’t feel comfortable, I move on.

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Are you feeling lucky? No.

More often than not, especially lately, I feel like therapy isn’t serving me as well as it should. This can happen if you’ve been through the process a lot. I know myself pretty well, and even if I didn’t, you can only rehash your past so many times before it gets to be trodden ground. In any case, I’ve found the directness of life coaching to be more helpful — a topic I’ll touch on in a future column.

Over the past few weeks, though, I’ve found myself returning to something one of my last therapists said. We were discussing my illness anxiety and how I catastrophize every little symptom. (Raise your hand if you treated every cough as pneumonia and every fever as the flu when you were a child! Those kinds of precautions are necessary when you have SMA; unfortunately, it can mess you up pretty bad, especially if you are predisposed to anxious rumination.) I admitted to always expecting the worst, even when the problem in question isn’t really that serious. She asked why, and I said, “Well, I guess because I feel unlucky.”

This wasn’t some unexpected revelation. At least, it shouldn’t have been. Still, it took me by surprise. I consider myself a pretty optimistic person. I have my moments, like everyone does from time to time, but for the most part I try to maintain a positive attitude. But lurking beneath that positivity was the undeniable — if new to me — fact that, on the whole, I feel unlucky.

It’s not that bad things happen to me. There’s the SMA, of course, and my dad’s cancer, but other than that I have been extraordinarily lucky in life. I’m still here, for one, a whole 21 years after I was supposed to die. I have an incredible support network, helmed by parents I will never be able to repay in full. I have a knowledgeable medical team within driving distance of my fully accessible home. I’m never without food, water, or electricity. The most traumatic parts of my life, like getting a spinal fusion at the age of 8, turned out fine; I survived, even though the odds were against me.

Why do I feel unlucky? I don’t know. That’s not a question I can answer at this point in my life. Maybe someday I’ll be able to, but for now, it’s enough to ask it. To draw my brain’s attention to the ways in which it is primed to make mountains out of molehills. When my anxiety spikes, and I’m convinced that whatever symptom I’m experiencing is indicative of something terrible and incurable and not, in fact, my body being a body, imperfect yet trying — I ask myself if I’m living in a hypothetical future. Is my headache really a brain tumor, or is it just allergies, like I struggle with every fall?

Am I really dying, or do I just feel — inexplicably, with no evidence to back it up — unlucky?

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.