5 Things To Never Say To Someone With IBD
With Crohn’s and colitis awareness week having been last week, my autoimmune disease was on my mind almost 24/7. Getting to connect with so many other IBD warriors and share their stories on my Instagram was so amazing and showed me how bada** dealing with IBD truly makes us.
It’s made me more resilient. It’s taught me to listen to and honor my body. It’s made me mentally and physically stronger. It’s made me more grateful for everything (big and small). It’s made me a harder worker. It’s made me more confident.
The list goes on and on.
Although it may not seem like it at times, IBD has been a blessing in my life in many ways.
And it’s funny because I (clearly) have no problem talking about my autoimmune disease. No problem AT ALL. But for some reason, a lot of other people get awkward when it’s brought up. Whether they simply don’t know how to talk about chronic illness, don’t understand what IBD is, feel uncomfortable or like they need to pity me or whatever else it may be, there are many times I think “did you really just say that?!”
Thankfully, being in such a confident place with my disease, these things don’t phase me, but to someone who may be newer in a diagnosis or not as at peace with their diagnosis, saying something you don’t realize is goofy may hurt more than help.
So here you have it, my top 5 things to NEVER say to someone with IBD:
“But you LOOK fine”: yes, exactly, it’s an invisible disease, but just because you can’t see our illness doesn’t mean it isn’t there. Many times, I’ve felt less validated because I look perfectly healthy and have felt scrutinized as if I was lying because of it. Although I’m happy I look like a healthy, functioning 23-year-old, saying someone with IBD looks fine make them feel like you don’t believe them when they say they don’t feel well.
“I totally understand, I had a stomachache today too”: trust me, we get that you’re trying to be nice and show solidarity with us, but if you don’t truly understand what it feels like to have IBD, it’s okay to just say so. Because a once-in-a-blue-moon stomachache is not the same as daily (and sometimes) severe pain and definitely not the same as the pain IBDers have felt if they’ve ever had to be hospitalized (that’s a pain I wouldn’t wish upon my worst enemy). We don’t want to discount your own pain, because we understand your stomachaches are real too, but it’s hard when everyone thinks they “get it” yet we still feel misunderstood.
“You’re so high maintenance”: This one gets me. Like REALLY gets me. Simply because us IBDers may have more needs than others to ensure we stay well (for example, bringing our own food on trips, planning things to a T to make sure stress stays low and making sure there’s a public restroom wherever we go) doesn’t mean we’re high maintenance. It means we respect ourselves and our disease and want to be prepared. We don’t do these things for attention or for the sake of being divas. These things, to us, are needs.
“Come on, just eat it”: If you’ve never felt what it feels like to eat something you KNOW makes it feel like your innards are ripping out and your brain is full of cotton balls, please do not urge us to “just eat it.” Because to some, eating a spoonful of this or that may be no biggie, but to someone with IBD it could send them into a mini flare or, at the least, cause some very uncomfortable symptoms. Respect the food choices of IBDers, even if you don’t get it.
“Are you sure you aren’t exaggerating?”: This one makes my skin crawl. Just because, again, I may look fine, doesn’t mean my pain is all in my head. It’s like hi yes this is my body I’m pretty damn sure I’m feeling what I say I’m feeling!! This is huge too for the fatigue side of IBD, not just the stomach/colon/digestive pain. There have been times I’m so fatigued even the mere thought of getting off the couch exhausts me. I understand this type of fatigue is foreign to many, and I’m sure friends in college at times thought I was just milking it so I didn’t have to be social (lol such a grandma), but truthfully the fatigue can be overpowering. If someone with IBD says they’re too tire or in too much pain to do X, Y or Z, trust them.
That’s one of the most important components of forming friendships and relationships (or continuing friendships and relationships) with IBD warriors – trust. Trust that they’re making decisions they need to make for their own health (both physical and mental). Trust that they don’t do the things they do to get attention. Trust that when they say they’re tired or in pain, they’re probably even more tired and hurting even more than they’re letting on.
Trust and open communication are the keys. If you know someone with IBD or meet someone one day with IBD, keep these tips in mind and simply ask questions if you don’t understand. Many individuals with IBD may not be open about their disease, but many are. Even if they end up not wanting to totally open up, showing that you care and admit to not understanding certain aspects is the best thing you can do. :)
If you have IBD, what are some of the others things people have said to you that you wish they hadn’t!?
Related:Why My Autoimmune Disease Does Define Me, 10 Tips For Holiday Gut Health, 6 Tips For Navigating Social Settings With IBD and Other Gut-Health Issues, How Being Hospitalized for Ulcerative Colitis Changed my Life