Meg Runs Chicago 2021 with Team Challenge
My Personal Blog
WHY CCFA: Because it's hard to talk about, but it shouldn't be
"But Meg, why didn't you tell me you have IBD?"
This post was actually surprisingly hard to write - because there are SO many reasons, I really struggled to organize my thoughts.
For a long time, I didn't tell anyone about my IBD. Both before and after diagnosis, it was this invisible part of me that I barely acknowledged, even internally. Even with my family, I never brought it up, and neither did they. Aside from the pills I took to treat the disease and the follow-up doctor's appointments, I pretended it wasn't happening. Going about business as usual was a coping mechanism I clung to.
Part of this was probably my age, and the nature of chronic illness. When I was prescribed medication, I remember wondering how long the course of medication would last (the answer: until it stopped working and I needed a different medication). As a kid, most medications you take are short rounds of antibiotics for infections - you take your prescription for 10 days, and the sickness goes away. I couldn't initially grasp that this was a chronic illness I'd deal with for the rest of my life. Because I lacked the tools to process the gravity and meaning of my IBD diagnosis, I lingered in the 'denial' stage. It wasn't until several years later that I'd educate myself on my disease.
And luckily, I got away with it - the first-line treatment relieved my symptoms, and I carried on with life as normal. Unlike a lot of people with IBD, I had the privilege of deciding how and when to tell other people. Given that I'd managed to keep even the worst of my symptoms, pre-diagnosis, hidden from most people, now that the disease was under control, it truly was imperceptible to others.
If I couldn't even acknowledge it to myself, I surely wasn't talking about it with anyone else. IBD wasn't part of how I saw myself, so I didn't want it to be part of how other people saw me, either. I didn't ask for accommodations, so I didn't feel I owed an explanation. I didn't want pity, so I didn't give anyone a chance to offer it. I was lucky enough that my disease was both invisible and ignorable, and I happily kept it that way.
Plus, even if I'd wanted to let others in - how was I supposed to bring it up? "By the way, I have a chronic autoimmune condition" can be a bit of a vibe-killer, and doesn't naturally come up in conversation. Add to that the fact that this particular autoimmune condition, IBD, affects the colon, meaning its primary symptoms are bathroom-related (read: poop, diarrhea, gas, cramping, bleeding....) - there's an added stigma there.
Layer on this: the truth of the matter is that you can only truly understand life with this disease if you have it - and even then, there are aspects of others' IBD experiences that I can't grasp, and aspects of mine they might not fully empathize with. Even some of the doctors I've seen - doctors whose careers are dedicated to IBD - struggle to see and understand the full picture and experience of living with this chronic illness.
It's a hard thing, to be misunderstood, and a scary thing, to allow others the chance to attach to me their misconceptions about my disease. And, most of all, it's a vulnerable thing - I had a lot of growing to do from the scared, striving teenager into a self-assured adult that didn't care what anyone else thought.
So here we are. I'm long done hiding, long done pretending - because I shouldn't have to, and neither should anyone else.
Ultimately, because of the stigma, because of everything I listed above, because of a dozen reasons I didn't touch on, IBD is hard to talk about - and this means that life with IBD is harder than it should be. And that's why I chose CCFA for my fundraiser - to do my part to change it.
by Megan Loomis on Tue, Apr 13, 2021 @ 7:41 AM
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