What Not to Say to Someone with IBD

As someone who has lived with IBD unofficially for 15 years and officially for 8 years, I have heard just about everything in the book when it comes to other people’s questions and responses about my disease. I have even gone so far as to develop an “elevator speech” to provide a non-detailed introduction to Crohn’s disease for the average person I meet. Unfortunately, I’ve learned that many people are uninformed about IBD, and many who still come off as insensitive.

I want to share some of the things that have been said to me about Crohn’s disease that either didn’t feel quite right, or were upsetting or offensive, and how I’ve responded.

IBD insensitivity

Comment: "I wish I lost weight this quickly"

This is offensive for several reasons, but mostly because weight fluctuations should never be a topic of conversation. For people with IBD, losing weight often means malabsorption, active disease, and heavy symptoms, meaning that the person is quite sick at this time. They are likely worrying about several things more important than weight loss. I'd reply to this by saying "My weight loss isn't a choice. It actually signifies how sick I truly am."

Note: on the other end of the spectrum is the comment "Wow, you've really put on weight!" - this is what I've heard frequently in the last few years. For me, this has come from being prescribed steroids frequently until my IBD was controlled, and becoming steroid dependent once I was diagnosed with another condition. I typically reply to something like this with the statement "Im aware of what I look like - but the change in my weight has not been by choice." - and to be honest, something like this could speak to the comment above about being underweight as well.

Comment: "But you don't look that sick!"

This is a combination of naivety and offensive - because most people don't know what "sick" really looks like. There are several times I've needed to seek emergency treatment or spent long stays in the hospital when on the outside I may look "fine" but on the inside I'm experiencing severe symptoms of Crohn's disease. My reply to a comment like this would be to try to explain some of the symptoms I'm experiencing (insert here - dehydration, ulceration, severe pain, frequent bathroom trips, nausea, vomiting, etc.).

Comment: "Have you tried going gluten free?"

Everyone and their mother thinks they can suggest something to me that a) I haven't heard or tried before, and that b) this autoimmune disease can be "cured" or even managed by just one thing. Ignorance here is bliss. My response would be something along the lines of "There are several factors that have caused me to develop Crohn's disease, and there currently is no cure. I'm working with my doctor/team of doctors to manage my symptoms, which includes (insert here - medication, diet, stress management, etc.).

Comment: "I know what you're going through, I have (insert here - IBS, lactose intolerance, etc.)."

This one grinds my gears more than any of the others, because I've struggled with severe Crohn's disease and I'm quite positive the pain and symptoms are far more miserable than anything else in the GI category. I can appreciate the attempt of someone else to relate to what I'm experiencing, but the comparison game is one I refuse to play. I would respond with something along the lines of "I appreciate your trying to empathize, but IBD is much different than x. I'd be willing to share the symptoms I experience daily if you'd like to better understand what it's like to live with Crohn's disease."

Have you heard any of the comments above? How did you react/respond? Did I miss any offensive or insensitive comments you've heard before? Please add them to my list by commenting below!