You Don’t Have Crohn’s? Then Keep Your Comments to Yourself!

Unless you’ve been through it yourself, or are a caregiver for someone who’s suffering, you have no idea what it’s like living with Crohn’s. So much happens behind the scenes that makes this disease way more complicated and painful than most people realize. Unaware of many of the symptoms and complications that accompany Crohn’s, people tend to believe having this disease merely means having to go to the bathroom a lot, and maybe having to watch what you eat. Ha! If only it were that simple. This generic information about Crohn’s may come from a friend who has a neighbor with Crohn’s or a coworker who has a nephew with it or the recent commercials advertising different biologics, etc. Regardless of where they heard it, this incredibly basic description of Crohn’s just barely scratches the surface.

Most people don’t have an up-close and personal experience with Crohn’s, so they don’t have any idea what it looks like to live with it. Yet, for some reason, some people still feel comfortable making comments and offering unsolicited advice to Crohnies, despite only having a vague understanding of the disease. These comments can be frustrating, annoying, and can even border on hurtful. I don’t know if it’s ignorance, stupidity, or just a total lack of compassion, but I’ve heard some pretty obnoxious comments. I’ve heard things like, “You’re having stomach problems? So, what? I get diarrhea, too” and “You don’t look sick” and “Ugh, you’re so lucky! You can eat whatever you want and not gain anything!” just to name a few. Really nice, huh?

We don’t want to hear it

You’d think that knowing virtually nothing about Crohn’s would deter people from making flippant comments about it. Unfortunately, I’ve learned that that is rarely the case. These remarks could come from anyone: a stranger at the grocery store, a waitress taking your order, a friend, a family member, a coworker, a boss, the list is practically endless. At the end of the day, it doesn’t really matter who said it, the result is the same. These comments are annoying at best and insulting at worst. Either way, I wish they would just keep their thoughts to themselves!

Now, not all who make these kinds of comments are insensitive, mean people. Sometimes, they just don’t realize how upsetting a comment can be or that what they’ve said is rude or hurtful. On top of that, there are plenty of times when things are said with the very best intentions, but still miss the mark. These remarks usually come from the people who care about you, who mean well but still just don’t quite know what they’re talking about. It’s easy to see that, in their mind, they’re just trying to help in any way they can. I get it. But, being told that “Mary’s neighbor’s daughter got a fecal transplant and it worked for her, so you should try that,” or “You should stop eating gluten and dairy because I have a friend with a bad stomach and that worked for her,” isn’t helpful. At the end of the day, whether the comments are mean or well-meaning, they both are annoying and exasperating in their own way.

What I wish they knew

There are a few thoughts that flash through my mind whenever someone gives me uninvited advice about Crohn’s. First, what works for some doesn’t automatically mean it will work for all because Crohn’s is so diverse and complicated that no two cases are identical. Second, I’ve most likely already discussed that with my doctor and it doesn’t apply to me. Third, I’ve probably already tried that because I’m desperate to feel better and I’ve tried just about everything.

I know I can’t be the only one who’s dealt with these kinds of remarks, and I’m dying to hear what others have experienced. What comments have you heard that made your jaw drop? What’s the worst unsolicited advice you’ve ever received? How do you deal with hearing these types of comments?

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