In another part of my life, far, far, away from Crohn’s disease, I’m experiencing grief of a sort, and I am working through it. (Don’t worry; no one has died.) With this grief comes frustration from people who know the situation, but still say the wrong things — the opposite of what I want or need to hear.

Living through Crohn’s is sort of like living through grief — grieving the life that I could, and should, have led, grieving the fact that I’m not a healthy person, grieving the abnormal way I must live. From eating strangely to extreme exhaustion that I must give in to at any time, to frequent colonoscopies, shots in my stomach every few weeks, and repeatedly going for blood work, there’s a lot there to deal with.

Following are some of the wrong things people say to me. When I’m done with my list, I hope you’ll add some of the wrong things people have said to you.

1. “At least you’re not going to die.” Is that supposed to make me feel better? Sure, I’m really sick, but at least I’m not on my deathbed? (By the way, people have actually died from complications due to Crohn’s disease.)
2. “But you’re so lucky to be thin!” Yeah, I guess it’s great that I get to wear small clothing sizes. I can’t always keep up my weight because having Crohn’s means I often don’t feel like eating, I get full fast, and I go to the bathroom all of the time.
3. “Oh, I thought you were going to tell me you have cancer.” I’m sorry I disappointed you with my boring illness.
4. “There’s not a cure? There has got to be a cure.” Um, no, not every disease has a cure. But thanks for telling me that I don’t know enough about my illness to know there actually is a cure that I’ve overlooked.
5. “My best friend/cousin/boss went on a diet where he/she removed [XYZ], or only ate [XYZ], and he/she was cured!” Okay, well, I don’t believe in strict diets to cure this, since they have not been proven to work. And if they worked for everyone, everyone with Crohn’s would be walking around healthy.

OK, so I have five to get us started. How many can you add?

***

Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.