7 Women on How Chronic Illness Changed Their Relationship With Their Bodies

Photo:

Getty/Caroline Tompkins

"That's the most insane sunburn I've ever seen," my friend observed as we drove back to our neighborhood from a long, unshaded hike in L.A.'s Topanga Canyon. I reflexively brushed my hand against my chest and promptly felt my stomach drop. In just an hour, my skin had bloomed into angry, rough red patches—something I had only experienced one other time in my life before, when I was 8. By the next morning, the flaky, painfully itchy rash had spread to my neck, back, legs, and arms.

I often "forget" I have an autoimmune disorder, because I am exceedingly lucky enough to have one that will only rear its ugly head a handful of times in my life. I suffer from psoriasis, a chronic, inflammatory skin disease that causes skin cells to build up on the surface of the skin, resulting in red patches. I specifically have a relatively rare variety called guttate, which tends to stay dormant until triggered by either strep throat or a bad sunburn (or in this latest case, both)—those rare flare-ups can cover my entire body in the disease's telltale rash.

The infrequency of my disease doesn't make it any less debilitating, even if it's only from a relatively superficial POV. Again, I don't deny how fortunate I am to not have symptoms that leave me bedridden or in serious pain. But feeling deeply uncomfortable in my own skin—quite literally—is a tough thing to bear as I ride out each flare-up, and they can last several weeks before disappearing entirely. I spent much of that September during my last breakout wearing pants and turtlenecks, even though it was still high summer in L.A. I remember wanting so badly to go to yoga just to decompress and forget myself for an hour but feeling too embarrassed to do so.

For better or worse, chronic illness forces us to reassess our relationship with our bodies: what they're capable of, the intricacies of healing and regeneration, and how we relate to physical appearance. It was, for example, psychologically exhausting to experience this psoriasis flare-up during a time in my life when I was still feeling raw from my eating disorder recovery. That month forced me to reckon with any residual urges to control my appearance, simply because this was so far beyond my control. And while it wasn't easy, it was ultimately cathartic. I came out the other side feeling relieved it was over but also with a newfound appreciation for my health and my body.

But mine is just one story of millions. About 40% of Americans suffer from a chronic illness, and one-third of the population suffers from multiple. These conditions range from autoimmune disorders to cancer to mental illness—and more often than not, those who deal with them are carrying out their lives just like anyone else.

To get a clearer idea of how chronic illness specifically changes our perspective on their bodies, I spoke to a handful of women who have been diagnosed with a variety of chronic conditions. They share their eye-opening stories below.