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
WHY CCFA: Because it's personal
Reason Number One Why I Chose the Crohn's and Colitis Foundation: it's personal.
When I was fourteen years old, I was diagnosed with inflammatory bowel disease. My symptoms (more on that & my process of being diagnosed in a later post) had started over a year prior, but because of the nature of IBD and its symptoms, it took that long for anyone else to notice & for the doctors to figure out what was happening inside my body.
I don't remember the particular moment of being told my diagnosis, but I do remember my mom telling me what they thought it was. At one point or another, I was officially told it was Crohn's disease. Crohn's is the "entire-GI-tract-can-be-inflamed-if-your-immune-system-is-particularly-angry-and-out-to-kill-you" flavor of IBD, to be compared with Ulcerative Colitis, the marginally more docile "generally-prefers-to-stay-in-your-colon-and-rectum" younger sibling.
I'd find out years later the pathologist had actually called it "indeterminate colitis". That's the super-fun surprise flavor of IBD, where each GI you see labels you with their preferred flavor-of-the-day (/insert time period-for-which-you-are-under-their-care).
For what it's worth (next to nothing, for the record), the more convincing diagnosis in my case is Ulcerative Colitis. If you were to ask me what I have, UC would be my answer. Because I'd been in a "flare" (exhibiting clinical symptoms of IBD - again, more on that later) for so long, the inflammation in my colon at diagnosis was severe enough to expand beyond my large intestine & venture into the ends of my small intestine. Most of my doctors have agreed on this being typical of severe UC, though every doctor has their own take. In the long run - treatments are largely the same, so it's mostly the comfort of having language to describe what's going on in my body.
To bring it all back to my fundraiser: CCFA is an amazing and worthy cause on its own. But it's personal. And there are so many more reasons that I'll touch on over the next 30-odd weeks that I chose CCFA. I hope you'll join me, both in supporting this amazing cause by donating, but also in helping to break the stigma & barriers to care faced by people like me by following along and sharing my story.
So why CCFA?
Because it's personal.
Because it can ABSOLUTELY SUCK.
Because there's no cure.
Because it's hard to talk about, but it shouldn't be.
Because people aren't talking about it.
Because there's stigma associated with IBD & its symptoms, just like mental illness.
Because it's different from IBS.
Because it shouldn't be my job to educate almost everyone, including my doctors, on it.
Because you don't really get what it's like unless you have it.
Because even GI doctors don't always understand what it's like.
Because sometimes doctors say the REALLY wrong things, even with the best intentions.
Because it's freaking expensive.
Because insurance is a headache to navigate - coming from someone who has experience working in health insurance, & currently works in P&C insurance.
Because the list doesn't even end here.
Disclaimer - you might be reading this and thinking, "but Meg, I've known you since X, why didn't you ever tell me this?" & so stay tuned for my next post answering your question! In the meantime, I'll reassure you that it's no reflection of our friendship/relationship/etc., and honestly has nothing to do with you personally, and everything to do with me. It took everything in me to leave this disclaimer for the end, because I'd hate to hurt someone's feelings for not having shared this, but at the end of the day - this is my story to share and choose when and how to share it. I need to treat myself and my story with the same care, compassion, & dignity.
by Megan Loomis on Fri, Mar 12, 2021 @ 10:21 PM
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