How My Chronic Illness Affected How I See Beauty

by Sebastian Zulch

When it comes to interpreting and performing beauty, I often discuss how my genderqueer body informs the process of my routine. But there are other parts of myself that stay invisible, partially because of my feelings about them, like the fact that I live with chronic pain. In all honesty, this affects my relationship with beauty just as much as my gender identity does. Body positivity is something that I'm still trying to cultivate despite my illness, and unfortunately beauty is often tainted with shame over my sick and healing body.

I've been living in pain on and off since I was 11, when I was first diagnosed with three different chronic forms of tick-borne diseases. Lyme Disease, and other tick-borne illnesses like it, are often characterized as "invisible" diseases, making it easier (in my experiences) for doctors to write patients off as "perfectly healthy," "depressed," or, my personal favorite, "attention-seeking." Particularly in the beginning, physical evidence of disorder is few and far between. But once something like this goes untreated for many years — which isn't uncommon, likely due in part to the general skepticism surrounding it — the evidence becomes clear.

Much of my life has been spent coming to terms with the increased proof of all of my pain staring back at me in the mirror: In my skin, my eyes, my teeth, and my hair. I always felt, and still sometimes feel, ashamed that something I used to be able to hide is now so obvious.

In my teenage years — when my illness would often leave me requiring lots of bed rest and a walking aid — things were especially difficult. I often wouldn't have the energy (or spoons, as the chronically ill community calls it) to perform any kind of beauty routine beyond washing my hair or brushing my teeth. Between the debilitating symptoms and my depression, I would go many days without even doing the bare minimum. The beauty that I love today, with my multiple face washes, masks, skin treatments, and lipsticks, was an enormous luxury that my body usually couldn't afford. These days, I'm fortunate to be so able-bodied that I can do yoga daily and walk long distances without getting tired or hurt. But my illness still casts a long shadow over my visage and beauty routine.

On days when my symptoms are exacerbated, my skin looks pale, sallow, and full of shadowy dark circles that resemble bruises. My eyes may appear glassy and slightly yellowing. Long-term treatment for my illness does a number on my body, sometimes causing my hair to fall out in clumps, my nails to rot and break, and my teeth to turn yellow and gray. Seeing this happen to my body reminds me of the climax of Beetlejuice, when Otho's summoning of Adam and Barbara from the dead goes unsurprisingly awry as the two age and fall apart before the dinner party's fascinated eyes.

But no matter how much I love Tim Burton, I usually can't feel very beautiful or body positive when I'm in this state. In fact, I often just want to hide and curse my love for all things makeup. Having people constantly tell me that I look tired or sick doesn't help much, either.

But as my definition of beauty has evolved, and I have started gravitating towards unconventional looks like black lipstick, new opportunities have arisen to look at my disordered body in a whole new way. I noticed that some of these beloved trends went very well with my pale and shadowy complexion, helping me achieve that #cutecorpse look to a T (pardon the bad joke). Learning to laugh about things has also helped me take the whole ordeal more lightly, and embrace my sometimes ghostly appearance as more of a trend or "look" and less of a symptom. So I swipe on some charcoal lip color, snap a photo, and caption it with something snarky about "wearing black to match my soul."

Documenting my symptomatic days by taking selfies became an important way for me to reframe these times into something that I have more control over and see enough beauty in to solidify in a photo. Initially, I took these pictures in the hopes that I could still look healthy, glowing, and happy on the bad days. But since that didn't feel honest to me, I then experimented with taking images of myself exactly as I was: In excruciating pain and depressed. I even use filters on occasion to accentuate any paleness and shadows going on in my face. By embracing those things — and letting myself be seen exactly as I am — something began to truly shift.

Suddenly, through my own construction and semi-confident captions, my illness simply became an alternatively beautiful aesthetic. Of course, my chronic pain and disorders are so influential over my life that it might feel disrespectful or silly to reduce them to an "aesthetic." But on days when I just want to participate fully in beauty and body positivism without falling into old habits or hiding myself in shame, I embrace my illness through my beauty routine.

Disability can be beautiful. Sick people can be beautiful. Often these are just words that I say and believe when applied to others. But I, too, deserve to feel attractive and confident in my discolored skin and fragile hair follicles. If remembering to take care of myself — to swipe on a little black lipstick and take a bunch of selfies — is what it takes, then so be it.

Images: Meg Zulch