Online, I'm the Picture of Health. Offline, I Have a Chronic Illness
I was diagnosed with Crohn’s disease at 19—but you'd never guess that from scrolling through my Instagram feed.
Illustration by Elnora Turner.
This essay originally appeared in the Privacy & Perception Issue of Vice Magazine, created in collaboration with Broadly. You can read more stories from the issue here.
I can neatly tie the milestones of my adolescent life to the social network I was using at the time. At 11 years old, upon enrolling in secondary school, I faked an older birthdate and joined Myspace. This was followed by Bebo around the time of my first period, and Facebook once I’d entered my first official relationship. On my 15th birthday, filled with teen angst and dissatisfaction for my English seaside city full of pseudo-liberals, I joined Tumblr.
Two weeks after my 19th birthday—roughly four months after moving away from my childhood home and going to university—I was diagnosed with a long-term illness, and subsequently joined Crohnology, a social network for people with Crohn’s disease.
To put it melodramatically, being diagnosed with a long-term health condition in my late teens felt like a new adult existence had just begun, only to grind to a halt. I swapped a social life for steroids through an IV drip, the freedom of grocery shopping for controlled diets, and sleeping in late for nearly shitting myself on the way to hospital appointments. The causes of Crohn’s disease are still unclear, but one factor is a malfunctioning immune system; I often describe it as my stomach attacking itself. It causes stomach pain, weight loss, diarrhea, fatigue, and more, but is largely unclockable to an outsider’s gaze. There is currently no known cure.
After being admitted to the hospital and having a camera shoved up my ass on multiple occasions, I quickly decided it was pointless to maintain any sort of boundaries or mystique around what I was going through. Despite being obsessed with the internet, I’d always been fairly quiet on social media. But six months in, and with a face bloated to several times its prediagnosis size due to a second course of steroids, I was posting selfies in my underwear to Tumblr—something I never usually dared to do—accompanied by lengthy captions outlining my experience of being unwell.
I used my newfound inner “thot” to make sense of my sick, quickly changing body. Perhaps a part of me felt subversive pairing provocative images with entirely unsexy passages recounting hospital admissions and calcium tablets. Documenting my shifting appearance on Tumblr helped me regain some of the control I’d lost over myself. I started to feel confident in the weight I was gaining as a side effect of my treatment. I bared it all as a medal of what I’d been through—and a sign that I was working to get better.
On Crohnology, however, I divulged little more personal information than my first and last name. I spent evenings after university lectures scouring its existing forums on different medication and recovery plans. The duality of the two sites was jarring—on one platform, I was schooling myself on the vitals of femme self-care and social justice; on the other, I was taking advice about the pros and cons of different meds from 40-year-old men on the other side of the world.
Recovery isn’t a linear process when it comes to any long-term illness. As my health fluctuated, I quickly learned that granting everyone full disclosure to my condition made them feel entitled to an opinion, and that no matter how cheery I acted, those around me would always treat me as unwell.
By the time I hit my 21st birthday and the two-year mark of my new chronically ill life, I’d cut out multiple friends. My housemate stopped speaking to me the day I came back from hospital with my new identity as a sick person. I hit the block button on my once-best friend for pointing at dog shit in the street and suggesting it was me who caused the mess—something they considered a completely reasonable joke, considering the little control I had over my bowels. Eventually, I decided to shut off and stop talking about Crohn’s disease completely, both online and off.
When I moved to London at age 20, I logged off Tumblr, disabled my Crohnology subscription, and opened an Instagram account. No more elated status updates after escaping another hospital admission; no more captioning my posts with health updates; and no more asking strangers if cutting out bananas would aid my recovery. Scroll through my Instagram feed today, and you’d be forgiven for mistaking me as able-bodied. My well-framed selfie is consolation for the fact I spent hours on my makeup, and then bailed on going out due to a flare-up of my symptoms. A snap of my new shoes makes up for the fact I can’t walk in them for more than 15 minutes due to joint pain, and my Throwback Thursday hides the fact that I’ve been in bed for a week, unable to move because of chronic fatigue.
This time around, I’ve found that chronicling the times I do feel good is crucial to my own self-preservation, and acts as an escape from when I’m feeling particularly unwell. It reminds me that I’m not defined by my illness, and prevents others from judging me. I’m afforded luxuries that those with visible disabilities often aren’t. I more or less manage to live without fear of discrimination, avoid uncomfortable conversations or questions about my condition, and am treated as able-bodied by most in my day-to-day life.
That cover does have its downsides. Because of my online persona, I’m awarded no free passes—no slipping on a deadline due to being unwell, and no bailing on a friend one too many times. Most of the time, though, the payoff is worth it. On the internet, no one knows I’m posting from my toilet seat, doubled down in pain. But I don’t owe authenticity to anyone.