Inflammatory bowel disease, otherwise known as IBD, is often misunderstood by those who aren’t affected by it. In fact, some seem to forget the “D” part of its name: disease. IBD is an autoimmune disease — meaning it’s not “just a stomachache,” and its effects can extend beyond the digestive system.
To bring some much-needed awareness to this chronic illness, we reached out the Girls With Guts community on Facebook, as well as our own Facebook readers, for the things people with IBD wish the rest of the world knew. Here’s hoping these shared “secrets” lead to greater understanding:
1. “It’s not just a bathroom disease.”
2. “I am always in pain, even if it doesn’t seem like it. I have to push it out of my mind in order to function.”
3. “When I say I need to use the bathroom, it means I need to go, like, now! If not, there’s a 99 percent chance I’ll end up pooping my pants.”
4. “My diet is my diet and it fluctuates [a lot]. Sometimes I can eat salad, sometimes I can only eat white bread. Leave me alone about it.”
5. “One day you feel so good, and the next day you could feel absolutely horrible”
6. “I am not my disease. While some aspects of life are harder, many of them are not, and I function quite well.”
7. “Pain pops up, and no, it’s not that I ate something ‘wrong.’”
8. “There is no cure. Stop telling me to try diets that don’t help. Don’t tell me yoga cures all. Don’t tell me it’s all in my head. Don’t ask me if it’s the same as irritable bowel syndrome (IBS)!”
9. “It’s not my fault I have to cancel plans at the last minute.”
10. “Exhaustion is a huge struggle for me. It doesn’t matter if my inflammation is under control or not. It’s something I always struggle with. And it’s not something more sleep will fix.”
11. “Just because it’s not obvious (or I’m having a flare) doesn’t mean it’s not there and I’m not in pain. Have patience with all the ‘extra’ stuff that comes along. Just love me the same!”
12. “Yes, my stomach did make that incredibly loud noise. No, I am not hungry.”
13. “Sometimes eating is really sh*tty.”
14. “No matter where I go, I like know where the bathrooms are on the way there and where all the bathrooms are once I get there.”
15. “I don’t want to hear about some wacky cure you read on the Internet.”
16. “People compliment my small frame all the time. I’ve even been called ‘lucky.’ But I have to force myself to eat anything. I feel weak; I hurt all over from exposed bones; my vitamin levels are abysmal. And if I do eat and I actually can keep it down, it can feel like acid is running through my body.”
17. “My joints are throbbing. It may be the disease or the treatment. But either way, they never get better.”
18. “No, I don’t need ‘more vegetables or fiber’ in my life.”
19. “It is an unpredictable autoimmune disease. It is not what you do or don’t eat, [and] it is not a lifestyle illness. It is just there, and it is a chronic illness. There is no cure.”
20. “Fatigue isn’t just, ‘Oooh, I’m tired.’ It’s more like, ‘I actually cannot find the energy to eat or move, [and] my body literally feels asleep.’”
21. “I worry about where I’m going to poop every second of every day (unless I’m at home).”
22. “There’s a reason I’m eating a ridiculous diet. It’s to help with the pain and bloating and constipation. And I really don’t want to discuss with you why I’m eating this way.”
23. “Don’t judge a book by its cover, or in our case, by how we look. We could be struggling a lot just to be doing what we are, so be kind!”
*Some responses have been edited and shortened for brevity and clarity.
What would you add to this list? Share with us in the comment section below.
