The main theme of Inflammatory Bowel Disease (IBD) Awareness week (December 1st-7th) this year is making IBD visible. What does this mean? IBD is considered an “Invisible Illness” which means that even though we don’t look sick on the outside, our insides show a whole different story. I can’t tell you how many times I have heard “but you don’t look sick.” This happens to IBD patients more often than not which is not okay. While I appreciate you saying I don’t look sick, that’s not helpful when we are trying to show that IBD can be very debilitating and is so much more than just a bathroom disease.
Why we need to make IBD Visible.
Why do we need to make IBD visible? People need to see the face of IBD, that just because we don’t “look sick” does not mean we aren’t. I have always wondered what sick actually looked like. We need to clear up misconceptions, raise awareness which leads to funding for research and so much more!
Clearing up misconceptions.
Making IBD visible also helps clear up the misconceptions that come along with the disease like IBD is NOT IBS, IBD is more than just a bathroom disease, it is not just a stomach ache. IBD is so much more than that. It’s fatigue, embarrassment, depressing, painful, it’s incurable, it causes other problems outside of the GI tract such as eye inflammation and joint pain, surgery. We deal with a thousand obstacles a day yet most people have no clue what we go through. I personally have had 4 total hip replacements due to a complication from prednisone. Nobody would ever know that I have had hip replacements, and would not relate it back to IBD but that’s where it came from.
Making IBD visible also raises awareness for the disease. Awareness leads to better education of patients and those affected by IBD. More awareness also means more funding for research which in turn leads to better treatments and possibly a cure. Making IBD Visible is so much more than just telling people about IBD, it’s about showing them what IBD is truly like and that even though we don’t look sick on the outside, we are fighting a war on the inside.
I would love for you guys to send any pictures to me of you raising awareness and making IBD Visible that I can share with the community. Let’s make IBD visible and show others the real side of our disease.
IBD looks like me.