At the beginning of this year, I had had enough.
It was January 29, 2021: The Capitol had been attacked; Biden and Harris had been sworn in; the COVID vaccine that promised a return to “normal” was slowly but surely trickling its way down the essential worker and health care professional chain to the rest of us; and I was sitting for the 49th time at the hospital in a plastic-coated armchair with an IV attached to one arm and a blood pressure cuff wrapped around the other, very aware of the pitying eyes of cancer patients around me who didn’t know why a vibrant 20-something (at that time) was also getting a bag of meds poured into their system.
A couple chairs over there was a woman in a bright headscarf getting receiving her own sack of chemicals. She was talking with the nurse about how she hadn’t seen some of her family members for a year because no one was willing to stay out of restaurants or stores for two weeks so they could safely visit her. By this time, my IV aperitif of Benadryl was kicking in and the room was getting fuzzy, but my brain was on full anger mode on behalf of this woman.
Like any well-adjusted millennial with hospital WiFi, I took it to Instagram.
Under a rather eye-catching (or so my Bennie-brain though) photo of my outstretched, IV-attached arm, I put this caption, which was my first true social media admission to having Crohn’s disease:
“Now, I *know* no one who follows me on here thinks COVID isn’t a serious threat, but on the off-chance one of you has someone in your life who does…
Any time I hear someone wrongfully say that COVID has a high survival rate and the only people who die from it are over 60 (that’s not that old, folx) or already sick, what I actually hear is that people who are older or disabled are expendable. As I type this, I’m sitting in a chair on an IV drip I get every 8 weeks to keep me from having Crohns symptoms. The trade off is that it makes me immunocompromised which…turns out not to be so great during a pandemic. But rather than go back to stomach aches that crippled me for a year and a half before diagnosis by skipping treatment, instead I remain exceeding careful and implore everyone else to remain smart, even as we start to open restaurants, schools, etc. One of those people at the highest risk is me, and I don’t care if you miss sushi bars and beer on tap. I love those things too, and I’d like to survive so I can enjoy those things when it’s safe again.”
What is Crohn’s, anyway? Samantha Irby succinctly explains it in her first essay collection, Meaty:
“Crohn’s disease is an inflammatory bowel disease that causes inflammation of the lining of the digestive tract….the cells in my body that are supposed to protect against infection don’t recognize food and the normal, harmless bacteria that are in my intestine.”
Put simply, our immune systems are confused overachievers — and there’s no cure to their mania. None. Sometimes it goes into remission, but for the most part you’re always just waiting for a flair-up that will probably come at the most inconvenient time. For Irby, this means days of diarrhea, nausea, bread-and-water diets, etc., and, according to her own extensive research, it always hits when she has a new toxic boyfriend in her life.
For me, it means that I get knifed in the stomach by an invisible stranger every 7-10 minutes (the intervals change just to keep things interesting), and the only thing I want to eat is boxed mashed potatoes. The kind with the bacon bits and cheddar, preferably. I also lose my period (not a huge concern when you’re a 21-year-old virgin who hasn’t been visited by any archangels, but terrifying otherwise); my hair starts falling out from malnutrition and the blistering hot showers I take to feel better; my shin bones and calf muscles feel like they’re being pulled apart; and you’ll find me lying face-down on cool bathroom tile floors like a cat in the summer, trying to find some goddamn relief.
I’ve only had one flair-up since my diagnosis in 2013. It was summer 2018, and I remember it starting while standing in my nontoxic then-boyfriend’s kitchen. The room fuzzed out and I tried to put all my focus on watching him submerge a pork tenderloin in a sous vide bath while wondering who the fuck was shoving the carving knife between my ribs. A couple tests and six-week Prednisone regiment later (stay tuned for a mini-post of how fun that is), and I was back to normal.
Suffice to say, anyone who knows me personally knows that I don’t make a big deal of my Crohn’s because it never has been a big deal — to me, anyway. To a lot of people, Crohn’s is a near-death sentence; to some, it is death, because you essentially can’t eat without your immune system trying to kill you in the slowest, most painfully way possible.
Call it privilege of the greatest kind: I grew up in a middle-class home with access to incredible health care and a father who had already been diagnosed and somehow found the greatest gastroenterologist on the planet who, upon retiring, referred him to the runner-up. So the minute I finally, begrudgingly, told my parents I was feeling like shit (I thought it was bad Chipotle eaten the night before we dropped my first magazine issue as chief editor, but a burrito bowl consumed on Oct. 17, 2012, shouldn’t still be causing stomach pains on June 25, 2013), Dad got me an appointment with his doctor. Three blood draws, a barium series, a colonoscopy and an endoscopy later, I received for my 22nd birthday a chronic illness diagnosis and prescription for a bimonthly Remicade drip — a drug that tells my immune system to chill, which works wonderfully…until a fucking pandemic happens.
Which brings me back to January 29. (I heard that sigh of relief.)
When I woke up after my treatment two hours later, my Instagram showed that I had upwards of 50 likes and several comments from people in my life who I never knew had Crohn’s disease. The burlesque singer whose gigs I used to stalk — I mean, track — around the city? Crohn’s. My coworker out in San Diego? Crohn’s. The IT & Data Analytics director I worked with in London last spring? Almost died from COVID that December and I had no idea. Something about my post made them all feel more comfortable with talking about their own experiences, and to this day I thank them for it.
We’re not all like Samantha Irby, writing out our experiences for everyone to read. Sometimes I wish more of us did, though, because I spent half of yesterday laughing, then pondering, over her bluntly honest exploration of a different, far more severe experiences with the disease. It made me think harder on how my rather minimal experience with Crohn’s has shaped the way I view its effect — or, rather, lack of effect — on my life.
For one, apart from having to take time off for treatment, I’ve never missed a day of work because of Crohn’s. I’ve never had to say “I can’t eat that” because I’m not sure my immune system will allow my digestive system to tolerate it. I’ve always had good health insurance — either courtesy of my parents or my cushy corporate job — that not only approves my Remicade prescription every year but also pays for most of each $10,000 treatment session. You read that right: The meds I’m on cost half-a-newish-car every eight weeks. Our health care system is fine. At my sister’s wedding, guests were telling my mom how healthy I looked, like they expected some waif hobbling down the aisle instead of a gleaming bronze yoga goddess. That’s a joke, as I’m still pasty and had by that point accrued my winter insulation despite daily vinyasa practices, but it’s also not, because that’s what Crohn’s does to a lot of people: It wears them down into joint-pain soup or brittle skeletons.
In 2018 my company happened to assign me the internal communications project for a disability self-ID effort among our employees. Leadership wanted to know how many people have disabilities so we could better serve them with accommodations (and put the numbers into our growing Diversity, Equity and Inclusion report), and as an ad hoc HR Communications teammate, I was the go-to for it. When I pulled up the ADA list of covered disabilities, my eyes went directly to it: Crohn’s disease. I’d been living for five years with a disability and didn’t even realize it, mostly because my experience with it has been so milquetoast — milk and toast, two things that people with a severe Crohn’s flair-up need to stay away from, by the way, but not your eat-everything-and-anything girl! — compared to the scary connotation that the capital-D Disability caries with it.
But then COVID happened, and I had to hear every armchair epidemiologist under the sun talk about how only the already-sick die from the virus. And I thought about all the people I’ve seen when I go for treatment. I thought about the people over 60 like my own parents. I thought about all the people who I didn’t even know had a disability like mine. And, finally, I realized that hey! I’m one of those people! I’m immunocompromised and immunosuppressed, and COVID could actually kill me! My underdeveloped sense of mortality suddenly graduated college and got its first apartment.
It’s been almost a year since hearing the conversation at the infusion center that launched the Instagram post that told the world — meaning 270 followers — I had Crohn’s disease. Maybe it’s just the kind of people I attract and retain in my life, but everyone understood and shared words of concern and encouragement. A lot of them have taken hold of my “I’M IMMUNOCOMPROMISED BUT EVEN IF I WASN’T YOU SHOULD CARE ABOUT IMMUNOCOMPROMISED PEOPLE’ banner (a long tag line means a long banner and plenty of room for fellow carriers) and carried it into their own battles with people who don’t view disabled people as worth protecting, either as immunocompromised people themselves or using me as their poster woman. And I love them for it.
If my story changes the mind of just one person to be a little more compassionate, a little more understanding — or if it makes a fellow Crohn’s disease diagnosee (aka a Crohny) feel seen or less alone — then the last hour I’ve spent at my kitchen counter nursing day-old cold brew while typing this out will have been worth it. Putting my weird-ass arm photo on the ‘gram in January will have been worth it. Continuing to navigate around the small but loud group of inconsiderate Americans denying COVID safety precautions will…still be annoying.
And with that, I’m off to yell at anti-maskers at a brew pub. (Cue “Ain’t No Stoppin’ Us Now” by McFadden & Whitehead.)