A little under a year ago, I was going through the chronic illness thing alone. Aside from twice-yearly gastroenterologist visits where I got my magic pills refilled, I rarely talked about having Crohn’s. Hell, sometimes I even forgot I had it. It was a magical time where I dated and danced and drank and ate nachos like there was no tomorrow.
But right around last Thanksgiving that all started to change. My magic pills stopped working. I was (attempting) to live my best Los Angeles life when my symptoms took on new levels of life-sucking. And then I ended up in a hospital a few miles from the beach wondering how things got so far from the life I’d imagined so damn quickly.
It was a few months later that I began blogging about my experiences with chronic illness. As a writer who was too distracted by my symptoms to think of much else, it seemed like a natural creative outlet for me–– and a great way to avoid ranting my loved ones’ ears off.
In the months since, my symptoms have gotten better, and then way worse, and then better again, and then worse, and then–– you get the idea. Life is a weird roller coaster, my particular ride just happens to involve more pain meds than the average. But the blog part of this crazy ride of life has actually brought me something really beautiful: the online chronic illness community.
Unless you’re a sick kid yourself, you probably aren’t aware that #Crohns and #ChronicIllness are super popular, active hashtags on instagram. #ChronicLife will get you a constant stream of results on Twitter. Facebook is full of private support groups for people with pretty much any kind of illness you can imagine.
I spent the first several years of my disease feeling pretty alone in it–– I didn’t know anyone in real life who had it, and all the articles I read online were full of stuffy medical jargon. Finding the little corner of the internet devoted to real people with the same problems I have has been comforting. If I’m having a bad day, one visit to the #Spoonie hashtag will net me dozens of people to commiserate with. If I’m having a good day, I can spread the positivity and love the same way.
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| Infusion day selfies are a thing, who knew |
So while my last post may be about how the internet is ruining us, I also believe the inverse: the internet has brought me some really nice people who know better than anyone else how much of a celebration it is to taper off of prednisone, or how bad it sucks on days you feel like you don’t own enough heating pads.
And in fact, blogging about my situation has also opened my eyes up to the fact that I was previously mistaken–– I know plenty of people in real life who are dealing with chronic illness. They’re just doing it pretty quietly, the way I used to. I’ve had old middle school classmates reach out, family friends, people I met once at a party. And the thing is, even though we may have nothing else in common, having this one huge thing makes all the difference. It bonds us in a weird sisterhood (or brotherhood, hey dudes) of people who “get it.”
So to my fellow chronic illness-havers, out there, keep on keepin’ on. Keep sharing your stories of how to make Humira shots less painful and what foods you make that don’t rile up your intestines and what exercises are easy on your joints. Keep sharing pictures of you on good days playing with your cute dogs or out for drinks with friends or binging Netflix because you want to, not because you don’t have the energy for anything else.
Thanks for the constant reminder that no one is ever as alone as they might feel, and that the roller coaster has as many ups as it does downs.
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In a bit of shameless self-promo, the lovely people of the online chronic illness community nominated me for a health activism award. If you feel so inclined, you can vote for me here. Leonardo DiCaprio and cute kittens everywhere will thank you.
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