Why I don't talk about my chronic illness on social media anymore
Spoiler: it's because I'm over all the input.
For those of you who don’t know, I’m chronically ill. I have a disease called endometriosis which causes multiple, full-body health issues. My entire life has been spent in and out of specialist offices for my heart, my endocrine system, and a lengthy battle with lyme disease. I live with daily chronic pain and I used to share a lot more of that online.
I built my following partially from smoking weed online but also from being incredibly open about my chronic and mental illnesses as well. For a good long time, I was happy to share my musings and insights. We were building a community of people who truly understood each other. I was helping folks get diagnosed and find better care. I was helping people realize they are never alone in their struggle and their feelings.
It genuinely felt good to have that community. It’s honestly something I miss a lot.
Sharing such deeply personal information is a bit of a double-edged sword though.
If you’re chronically ill then you know about all the suggestions and bullshit we have to deal with daily. As if gaslighting doctors and nurses weren’t enough we have to deal with friends, family, and co-workers giving us their un-educated and un-asked-for opinions on how to handle our chronic illness, what the cause of it is, etc. Just last week my Mom suggested I get pregnant with someone else’s child to cure my endometriosis. If you have endo you know how laughable this idea is.
When you build an audience of thousands of people it’s like amplifying the shit you already had to deal with 1000 times. I stopped talking about my endo as much because it simply became too much to talk about. I was getting tens of messages a day saying the food I ate was causing it, or that manuka honey and alkaline water would heal me. Messages saying that me simply talking about my illness was causing it. Everyone blamed my illness and my inability to cure what cannot be cured on my mental state or daily decisions.