You know that exhausting feeling of having to be “on”? Like when you’re hosting a dinner party or attending a big social gathering? It’s not that you’re not having a good time, but your cheeks hurt from smiling too much and the adrenaline buzzing through your body starts to make you feel panicky. When you live with a chronic illness, particularly a chronic illness you’re trying to hide, the emotional labor of always trying to be “on” rarely ceases.
In the third episode of The Baby-Sitters Club on Netflix, treasurer Stacey McGill rushes out of club president Kristy Thomas’ house because she can no longer keep up the facade of pretending to be okay. She feels faint, and she can’t risk Kristy and the other members of the club discovering her secret: she has type 1 diabetes, requiring an insulin pump, which she’s been hiding under her clothes.
In that moment, my heart ached for Stacey. I too have a chronic illness, which for far too long, I also hid under my clothes.
I have urticarial vasculitis caused by Sjogren’s syndrome, which basically means that my blood vessels swell like water balloons, building pressure until they burst, leaking blood under my skin and causing excruciating pain. To the casual observer, the blood spatters under my skin look like a combination between a really bad rash and a really bad beating. My skin bruises and swells with red and purple splotches, and it’s so painful it takes my breath away.
It’s also unsightly. And for the longest time, I cared more about how my vasculitis looked than the pain it caused me. So from junior high to well-beyond college, I hid my vasculitis under clothes so that no one would know I was sick, no one would know I was bleeding internally because of an autoimmune disease. If I could just cover up my skin and keep smiling through the pain, I wouldn’t be outed as “the sick girl,” which Stacey eventually confesses is her biggest fear.
But while Stacey stops hiding her chronic illness before the end of the third episode, bedazzling her insulin pump with blue rhinestones and proudly wearing it on the outside of her clothes, my journey to stop hiding my illness took much, much longer. And in my case, covering my vasculitis with clothes directly contributed to permanent blood vessel and nerve damage. Meaning I wasn’t merely hiding my illness, I was making it irreparably worse.
Of course, I didn’t know that at the time. There are many things that trigger my vasculitis—heat, tight fabric, pressure, stress, allergies, chemicals, standing too long, sitting too long, exercising too much, exercising too little. And I’ve had to figure it out along the way, as autoimmune diseases, which primarily affect women, are under-researched and under-funded. Meaning much about autoimmune diseases remains a mystery, and even my treatments are basically just trial and error. To give some context, the National Institute of Health spends nearly 10 times as much (per person afflicted) researching cancer than autoimmune diseases. And it spends $11 more per person researching small pox, which was eradicated in 1980, than autoimmune diseases, which affect 23.5 million people, 80 percent of whom are women.
So while I suspected that covering my legs in fabric—particularly tight fabric like jeans—was making it worse, I didn’t at the time have research or doctors backing up my suspicion. I was simply covering up my “flaws” as the beauty industry was constantly telling me to do. I didn’t subscribe to much of it—I rarely wore makeup and I remember matching my ball gown with fuzzy slippers rather than high heels at a formal thespian event in high school—but no matter how much I resisted the notion that what I looked like determined my worth, I wasn’t immune to media’s messaging.
The thing I didn’t know, however, is that my blood vessels become weaker every time they break from an autoimmune disease flare. So every time I wore jeans, I was weakening my blood vessels, making them more susceptible to future breakage. Wearing jeans to hide the skin on my legs was a double whammy for me in terms of flare-ups because jeans made my legs hot —which triggers vasculitis—and the tight fabric put pressure on the blood vessels under my skin—which also triggers vasculitis. Ideally, I should have been wearing what is currently my go-to outfit, a loose T-shirt and shorts, which lets my skin breathe and keeps it cool.
I’m grateful to the female-led team behind The Baby-Sitters Club on Netflix for putting a conversation about Stacey’s chronic illness front and center. Chronic illness and disability—particularly so-called “invisible” disabilities like type 1 diabetes and autoimmune diseases—are rarely thoughtfully portrayed in popular culture (if at all). According to a 2019 USC Annenberg report, which examined 1,200 popular films released between 2007 and 2018, only 1.6 percent of speaking characters had a disability. (Of those characters, the majority of were male and white.) Television doesn’t do much better: In the 2018-2019 season, 2.1 percent of primetime characters were people living with a disability. In children’s television, it’s even worse. According to the Geena Davis Institute on Gender in Media, people living with disabilities represent less than 1 percent of leading characters in children’s programming.
Considering that 26 percent of U.S. adults live with some form of disability, the lack of on-screen representation has real-life consequences. Perhaps if I’d had more chronic illness warriors like Stacey to look up to in my youth and early adulthood, it wouldn’t have taken me until my late 20s—more as a necessity than as an empowering statement—to stop covering up.