SMA Complicates Everything — Even Hygiene and Skin Care

I spent the majority of high school — and middle school, and undergrad, for that matter — stressed about my skin.

I’ve written about it several times, from my cystic acne saga to the wonders of Accutane (isotretinoin). I guess you could say I’m making up for those long years of suffering in silence. I’m still self-conscious, but that doesn’t preclude me from talking openly about my skin issues.

To be fair, it’s gotten better over the years. I can’t overstate the wonders of Accutane. The six months I spent on the pill were hellish, but looking back, I can say with certainty that the dry mouth, chapped lips, and persistent inflammation were worth it.

I’m still human, so I get a zit every once in a while, but my skin has never been as clear as it is now. Every once in a while, my dad will stop what he’s doing and ask, “Have you seen your skin lately?”

The irony, of course, is that my skin cleared up right around the time the pandemic started. What a waste of my dewy, evenly-toned, makeup-free face.

I still talk about my skin because the shame persists, no matter how good my face looks. I fret over the smallest pimples. I spend hundreds of dollars on skin care out of fear that my nemesis — cystic acne — will one day return. I complain about my keratosis pilaris (KP), known as “chicken skin,” or in my dad’s words, “orange peel.”

I tell myself that skin is skin. That I am beautiful just the way I am, and my body has enough on its plate without my incessant acne anxiety. But that doesn’t stop me from lusting after the myth of perfection. I scroll through Instagram and moon over picture-perfect selfies, even as I tell myself that I am better off focusing on what I can control (my creative work, the balance on my credit card, my mental health).

But there’s an aspect of skin conditions that we rarely talk about. Something that intersects with the lived reality of being disabled and, in my case, sedentary.

We often associate skin conditions with uncleanliness, poverty, and laziness; we assume that folks with acne simply aren’t committed to healthy hygiene. We equate eight-step skin care regimens with morality, and we expect people to do whatever it takes to achieve a certain level of sanitation, regardless of inaccessibility.

I wash and scrub. I moisturize religiously, and have spent far too much money on products meant to “cure” whatever is wrong with my skin. I have done everything I’m supposed to. But the truth of the matter is this: I sit. All day long.

I’m a human being with a gloriously imperfect body, so I sweat. A lot.

My care team has done everything they can to prevent irritation and breakdown, but skin is skin. Sometimes, there’s nothing you can do.

My new wheelchair is a work in progress, so I’m stuck with my old chair for the time being, but I’ve decided to be proactive and adjust to my new headrest in the meantime. I used to stick a black washcloth behind my neck to support my head, but I’ve since graduated to a firm, but soft wedge. It’s comfortable, and more importantly, it’s sleek as all get out.

But my neck doesn’t like it. I’m battling a rash that comes and goes, spreading from the base of my neck to my shoulders. I’ve tried everything short of antibiotics, and while I’m managing it well enough, I can feel my brain slipping into catastrophe mode.

It’s always something. If it’s not cystic acne, it’s KP; if it’s not KP, it’s a rash, a fungal infection, or a dryness that drives me nuts. The romantic in me wants the glitz and glamour of skin care, with plushy robes and rose-scented body spray. And maybe that’s what skin care is for some people! But SMA complicates everything, even hygiene.

The shame in me wants to give up. I’m disgusting, and nothing matters, and no one will ever see me naked (other than my caregivers; sorry, y’all), so what’s the point of washing this stupid body until I die?

But skin is skin. Sweat is evidence of life. I am alive, and that’s what matters.

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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.