Privacy and Perception Issue

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.

by Ione Gamble
12 July 2018, 1:55pm

This story appears in VICE magazine and Broadly's 2018 Privacy and Perception Photo Issue.

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.

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This article originally appeared on VICE US.