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

"I feel more in touch with my body than ever before."

Updated 10/08/19
True Stories About Chronic Illness
Getty/Caroline Tompkins

"That's the most insane sunburn I've ever seen," my friend observed as we drove back to our neighbourhood 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.

What It's Really Like to Have a Chronic Illness
Getty/Caroline Tompkins

Tia, 25

"I've been struggling with chronic daily migraines since late 2014. My migraines are medically defined as 'intractable'—meaning unstoppable. (Encouraging! Western medicine for the win…)

"I am actually incredibly grateful for this diagnosis. It has been such a learning lesson—our bodies are SO smart, and this was my body waving the white flag after a lifetime of living with a type-A, go-go-go, 100 mph mentality and all that. I grew up as a ballet dancer and always prided myself on having good 'body awareness,' so this experience has been incredibly humbling and so necessary. For the first time in my life (and after a lot of hard work and guidance), I'm learning to slow down and quiet my mind so I can feel into what my body is asking for, and for once I'm actually listening. It's too easy to override and go into autopilot and listen to our heads, doing what we feel we 'should' do instead of turning inward and following our intuition."

Samantha, 21

"I was diagnosed with my mental illness and chronic illness at 17—three days before my 18th birthday. Taking the time (because it does take time) to accept my diagnoses and educate myself made me realise that my body did not hate me.

"My body was saying, 'Okay, this is me. The only way to feel good is to treat me right.' Doing this has helped me gain confidence I never had and only faked."

"I have so much more respect and gratitude for allowing myself to be and do what I need. —Monica, 28, diagnosed with premenstrual dysphoric disorder

Sara, 30

"My chronic illness is called mycosis fungoides, a form of cutaneous T-cell lymphoma (cancer!) which is chronic. I learned about my diagnosis after being misdiagnosed for a rash I had for over two years. I finally found a doctor who knew about my rare disease and biopsied me when she felt like my rash was unusual. It is weird to have a disease that is on my skin and therefore can't be removed—at first I wondered (and sometimes I still do): How can I be comfortable in my own skin when it's causing me so many problems?

"But with my diagnosis, I have really focused on my overall health and wellness, worked hard to reduce my stress, and doubled down on eating healthy, nourishing foods and practicing self-care. Now I feel more in touch with my body than ever before—and I know to trust my gut after persisting to get my diagnosis (despite several doctors telling me it was essentially nothing!)."

Ellen, 21

Chronic Illness and Body Image
Getty/Caroline Tompkins

"I deal with IBS, depression, and have fairly severe scoliosis. I was diagnosed with scoliosis when I was 14, toward the end of middle school, after dealing with terrible back pain for years. My mum had brought up my back to my then doctor multiple times years before I was diagnosed, but it wasn't until I went to a different doctor for a physical that someone actually thought something was wrong. By the time I went to an orthopedist the doctor had referred me to, my scoliosis was fairly far along. My back had a 38-degree curve, which was just under the degree of what most doctors would recommend spinal surgery for.

"I was diagnosed with IBS about a year and a half ago, along with my depression. I had been dealing with terrible bloating and stomach problems for about a year before I was diagnosed with IBS. I was diagnosed with depression a few months after turning 20, after a sudden death in my immediate family. I had been feeling off for a while before the death occurred, and thought that I might have been dealing with fairly mild depression, but the death in my family made it worse to the point where I could no longer question whether or not something was off.

"One of my biggest insecurities from my scoliosis is the way it makes my torso look. Due to the curve of my spine, one of my hips is higher up than the other. This means one side of torso is curvier than the other. When wearing loose-fitting shirts or dresses, the curve is not so noticeable, but when I wear tighter clothes, it is definitely more prominent. This led me to stay away from tight-fitting clothes for years and basically banish all swimsuits. I can count on one hand how many times I've worn a swimsuit since I was diagnosed with scoliosis. Before I knew the cause of it, I was a bit aware of how my hips weren't even, but since my diagnosis, it feels like it stands out 100 times more.

"My IBS also has played a massive role in how I dress and feel about my body. My IBS causes me to be super bloated, to the point I look pregnant. Being super bloated is not only unflattering; it also is super uncomfortable. Over the past year and a half, I've had to learn how to dress based off of how my stomach looks and feels that day. This means I typically wear loose, flowy clothes or a jacket to help hide what feels like a baby bump.

"Body image is still a tricky thing for me to deal with. Some days I wake up and love everything about my body, flaws and all, and some days where all I want to do is hide because I feel ashamed I don't have a 'perfect' body. I'm currently working to undo my unhealthy, restrictive train of thought I had for a year and learning to love my body the way it is at this current moment. Although it has been tough, I feel like I have learned a lot about myself through all the different phases both my mind and body has gone through so far. This includes learning that there is no such thing as a 'perfect' body. Every body has its quirks, but that doesn't mean it isn't worthy of being shown off and appreciated. I've learned to appreciate and focus on what my body can do, rather than just focusing on just the physical aspects. I'm nowhere close to being in the mindset I want to be in when it comes to my body image, but I am actively working toward embracing my body for what it is."

Monica, 28

"I suffer from premenstrual dysphoric disorder (PMDD). For 15 years, I thought I had anger and depression issues and was diagnosed with PMDD in March 2018.

"I have so much more respect and gratitude for allowing myself to be and do what I need. It is so easy to get caught up in what you 'should' be doing or comparing yourself to others. I now know that sometimes my body needs me to slow down and feel my anger or sadness in the moment; it will pass soon, but accepting it now helps it pass quicker. I'm happy and grateful to understand how MY body and brain function. I judge myself and others less; we never know what someone else is going through."

"I grew up as a ballet dancer and always prided myself on having good 'body awareness,' so this experience has been incredibly humbling and so necessary." —Tia, 25, diagnosed with daily migraines.

Keisha, 28

"I was diagnosed with major depression disorder at 18 and endometriosis at 17. With depression, my relationship with my body actually changed for the better. I realized that just like with heart problems or thyroid problems, you have to take care of it (usually with medication and diet), and there's a way out.

"But with my endometriosis, my relationship with my body turned for the worse. I'm in a flare-up right now. Lots and lots of horrendous pain. I hate my pelvic area and my stomach. I feel worthless as a female because I'm unlikely to reproduce and I don't feel strong when I have to reach out for painkillers or time off work. Gyno problems are a nightmare because no one understands and people try to throw godly ridiculous solutions at you.

"I'm off work. I feel unreliable. Some days are better than others, but that means some people don't believe in my illness."

"How can I be comfortable in my own skin when it's causing me so many problems?" —Sara, 38, diagnosed with cutaneous T-cell lymphoma

Alanna, 32

"I have ulcerative colitis, anxiety, and latex allergy with latex-fruit cross-reactivity syndrome—an autoimmune disorder that causes your body to believe certain fruit and vegetables contain latex. I was diagnosed with ulcerative colitis at 17, anxiety at 14, and the latex allergy at 31.

"My diagnosis of ulcerative colitis left me feeling like my body had betrayed me. I dropped to a very unhealthy weight, yet my stomach was ballooned out so significantly I was often asked if I was pregnant. My latex-fruit cross-reactivity syndrome went undiagnosed for many years thanks to the symptoms mimicking colitis. I had developed allergies to most of my favorite fruit—avocado, banana, pineapple. I was sick nearly every day. I would have anxiety attacks when getting ready to go out because my stomach was bloated, and I had eczema all over my face due to my allergies. I would break plans with friends all the time because I felt ugly.

"In the past year, I've begun cognitive behavioral therapy for my anxiety and low self-image. My therapist gives me 'homework' where I put myself into a situation that I would normally retreat from—wearing a formfitting dress when my stomach is bloated, leaving the house without makeup. The days where I feel strong and comfortable in my body now outweigh the days where I feel that it's betrayed me for being sick."

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