Ask the Advocates: Insecurities and Hiding IBD Symptoms
Last updated: June 2022
Maybe it's which of your body parts are experiencing discomfort. Maybe it's what happens in your bathroom. Or maybe it's what happens when you don't make it to the bathroom. Having Crohn's or colitis can be messy. And it can feel too taboo to share openly about it.
So we asked our advocates: Over the years, are there pieces of your condition you've kept hidden or felt insecure about?
Hiding IBD symptoms
"I am insecure about when I've made messes. A few times I've had really bad diarrhea and I haven't made it to the toilet on time. This has happened especially with certain tests, like colonoscopies. I hate talking about that, and I especially hate that some of my loved ones have seen it happen. There is such a feeling, I think, among people that we should be able to control our urgency, and it confuses them when I can't. I try to hide the instances where I've made messes because I don’t want to deal with the shock and confusion that creates even more embarrassment for me." –Eshani
"I have been living with Crohn's for 34 years. In that time, I have always felt insecure about it, and only family, some friends, and my social media IBD family know everything to an extent. I have always felt that my illness was on a 'need-to-know' basis. I learned very quickly how to hide it – not necessarily the illness itself, but the symptoms. Many a time I would be flaring and in pain while at work, in a restaurant, walking in a mall, and no one knew. I clench my teeth and fists and long to get home. The perianal disease part of IBD is the hardest to hide because, with abscessing and fistulizing, it's hard to hide while you're sitting. THAT is where the pain and discomfort are. I would always aim for chairs with cushions. The wooden chairs would send my anxiety levels through the roof." –Vern
"Well, I can say for certain that I've never whipped out my colonoscopy images for anyone to see! Ha! I just keep those buried somewhere in the depths of a file cabinet. Thank goodness my new gastroenterologist doesn't send me home with pictures. No one needs that reminder. Our bodies supply enough 'real-time' images. But on a serious note, the constant urge to get to a restroom is a symptom I feel insecure about the most. Not making it to a commode is a reality I try my best to hide. It's not sexy. So, I keep quiet about those times. And I also keep a change of clothes with me at work and in my car. I say it's better to be prepared than not." –Traci
"One of the hardest things about IBD is that it can feel so shameful to talk about with others. For some reason, what happens in the bathroom is a taboo topic in our society. For me, the piece of this disease that I've kept hidden and still feel insecure about is the inevitable accidents. During my initial flare, I was terrified of not being able to make it to a bathroom on time. I was experiencing urgency, which made it feel like a bathroom was never close enough. I think this is something almost all of us with IBD can relate to at one point or another. It can be incredibly embarrassing to feel out of control of my own body, and it's a struggle to have honest conversations about that with others who don't have this illness." –Christal
"Luckily my son is a very secure person and has no problem talking about any medical issues, especially as they pertain to his need to maintain a strict gluten-free diet. My insecurities center on my guilt around my son's illness, though I know I did nothing to cause it. But when your child becomes sick suddenly and a doctor implies that his weight loss might be due to him not eating enough – which was absurd because when he's not in pain, my son eats enough for 3 — that doubt sticks with you. And when people stare because your child is so emaciated and pale, it burns through you. Or when you read that Advil might exacerbate Crohn's symptoms and you remember the one time you gave him Advil, it's hard to let go. As with my son's autism, I've relied on other parents to offer support and reality checks. That's the first piece of advice I would give anyone dealing with an ill child. Find your village. And find time to do something – anything – that takes you away from your spinning thoughts. We spend a lot of time reading gluten-free recipe books and cooking his favorites. It helps keep my son healthy and helps me channel whatever bad feelings pop up in a productive way." –Jennifer, caregiver
Share your experiences with IBD symptoms
Tell us: Do you try to hide your IBD symptoms? Are there parts of your illness you are embarrassed about? Share in the comments below.
What has been the most helpful for managing IBD symptoms?