You Belong in the IBD Community, Regardless of How Severe Your Disease Is
Where do you fall on the "spectrum" that is Crohn's disease or ulcerative colitis? Is your IBD more on the mild or the severe side? For many of us, the roller coaster that is life with Crohn's or UC has peaks and valleys along the way and can progress as the years go by.
I recently came across an Instagram post from a newly diagnosed mom with Crohn's that read, "My personal case is mild. To a point that when I read about other people with IBD, I kinda feel like I don't belong."
Our struggles deserve to be shared
It's unfortunate but completely understandable that many feel this way. It's a mix of survivor's guilt and not feeling like your experience measures up to someone else's. Maybe you feel as though your struggles are minimal, so they don't deserve to be shared?
As someone who was diagnosed with Crohn's more than 15 years ago, I can see why that may be the case. It's daunting to share your personal health issues and worried about being judged or looked down upon because you aren't on a biologic, haven't had a hospitalization, or needed surgery.
Crohn's and UC are a serious diagnosis
Regardless of how serious your IBD is, it's a serious diagnosis and should not be taken lightly. As easy as it is, life with chronic illness can not and should not be a comparison game. Each of us experiences IBD uniquely and differently.
As the years go on and you think about the setbacks--some big, some little, that you have faced, it can be difficult to discern where you fall on this so-called "spectrum". When I needed 18 inches of my small intestine removed and could barely eat, I would have said my disease was severe.
A shift in perspective on Crohn's symptoms and severity
Now that I'm 5 years into remission and haven't been hospitalized in that time, aside from bringing two babies into this world, I lean more towards moderate. Even though I'm still on a biologic and still do all the "extra things" needed to manage this beast of an illness, my perspective has shifted... and yours may, too. And that's ok!
At the end of the day, please think of the IBD community as a family and a resource for support and empathy.
While we all deal with different challenges, some more often and to different degrees than others, there's no need to diminish your current reality based on what you think someone else is going through. Please remember social media is a highlight reel, even for those of us with chronic illness.
We only share, what we want to share. There's a lot that goes on behind the scenes that is never shown.
A lot can happen and change on the patient journey
While it may feel easy to consider yourself "mild" because you haven't dealt with much yet, understand you are just starting your patient journey. A lot can happen along the way. So, hold on tightly to the comfort and confidence you have now, as you may need it later if and when the going gets tough.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?