Member-only story
I’m Sicker Than You
The online chronic illness community can be a boon. But it does have a dark side that makes way for more questions and insecurities.
I live in a world where most people have not heard of my chronic illness. In fact, because it is invisible, and unless you are intimately familiar with my moods and movements, you would have no idea I live with a rare chronic pain condition that channels 24/7 variegated pain throughout the left side of my face.
Unless you live with chronic illness — and I hope you don’t and never will have to — it is near impossible to imagine constant discomfort and acute pain. It is difficult to understand that this pain is a consistent current — with frequent swells and waves — and my job is to navigate it to the best of my ability.
By and large, the chronic illness community is full of empathy for members like myself. Through our stories, we cheer each other on. But there is a less generous side to our community that I’m learning about.
Recently, I saw an Instagram post that denounced the unfortunate tendency of some people to dismiss the different symptomatic experiences of others who share their diagnoses. Though I keep negativity like this at arm’s length, I have witnessed various shades of this online — and it is dangerous.
