May 17, 2020

7 Things You Shouldn’t Say to Someone with IBD

IBD is a pretty hard thing to deal with. As an invisible illness, people can’t see everything going on inside my body. My body is waging a war against itself and no one can see it when they first look at me. I’ve gotten quite a few reactions when I tell someone about my ulcerative colitis. A lot of people react really well when I tell them, asking about symptoms, what my day-to-day life looks like, what kinds of foods I can and can’t eat, what treatment options there are, etc. But there are always those that suddenly become PhD level experts in digestive diseases as soon as the words IBD are out of my mouth. And these “experts” tell me everything I’m doing wrong. A lot of people just don’t quite know what to say. There’s no right thing to say, there’s nothing that someone can say that is going to cure my IBD. But there are definitely things that people say don’t help. I made a list of the top 7 things you shouldn’t say to someone with IBD.
This article was published in 2020 as part of the International Fellowship Program for the Crohn’s and Colitis Young Adults Network. To learn more about CCYAN, visit www.ccyanetwork.org.

7 “Oh I know someone who has IBS! They changed what they ate and felt TOTALLY better!”

Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) seem similar in nature and they definitely have overlapping symptoms. But they are not the same disease. IBS only involves the colon, does not cause ulcers or lesions in the bowel, and is managed with medications and lifestyle changes such as diet and stress reduction. IBD, however, causes ulcers in the tissue of the digestive track. IBS is a syndrome, while IBD is a disease. IBS does not cause any inflammation, rarely causes hospitalization or surgery, the colon appears free of disease or abnormality during an exam, and there is no increased risk for colon cancer. With IBD, there is destructive inflammation that causes permanent harm to the intestines, the colon is visibly diseased during exams, and there is an increased risk for colon cancer. While both definitely impact daily life, IBD cannot be managed by just lifestyle changes. While people that say they know someone with IBS is trying to relate, it’s not the same. I have IBD and even in remission I still have IBS too. They just aren’t comparable conditions. See the infographic from the Crohn’s and Colitis Foundation for America comparing the two, below!

6 “You should stop eating junk food and try a salad! Your stomach probably just needs a vegetable!”

For some reason, my body does not like to digest a lot of healthy foods. Vegetables with hard rinds, salads, some fruits… my body does not digest it. For the most part, what goes in comes out without it being broken down. The pain associated with eating these foods is often unbearable. Even in remission, I have to eat raw vegetables and roughage sparingly. When I was flaring last year, I couldn’t even have little bits of lettuce on a sandwich. I was a frequent flyer of McDonald’s because, for some reason, I could handle junk food better than I could handle healthy foods. It got to the point where I would do anything to eat a salad. I missed apples and lettuce and cucumbers so much. People often told me it must be nice to just eat junk food and not have to worry about eating healthy. But the junk food I could eat didn’t have the nutrients I needed. And I missed veggies so much. Then there were the people that would tell me my IBD was probably just caused by junk food or could be treated by eating healthy. If eating a salad and never having French fries again meant curing my IBD, I’d do it in a heart beat. Unfortunately, that’s not how it works – and shaming me for eating the few things my body could handle just makes it worse.

5 “Can’t you hold it? You JUST went to the bathroom!”

No. I can’t hold it. When I was flaring, I was going to the bathroom within 5 minutes of eating anything. I was in the bathroom at least 20 times a day. And when I had to go, I had to go right at that moment. Middle of a store, an exam in class, driving down the road… whatever it was, I had to stop and run to the bathroom. Life would be a lot easier if I could just hold it. And crazy enough, I do know that I just went. That’s part of the disease, though. Frequent and urgent bathroom visits. Sometimes with no warning. Reminding me that I just went and making me feel bad for having to stop what I’m doing doesn’t make things move faster.

4 “But you were fine yesterday – can’t you just push through it?”

My IBD symptoms change day to day, sometimes even hour to hour. I can commit to plans and have to cancel 5 minutes before. I can look forward to something for weeks, only to feel sick an hour before I’m supposed to go out. And it is the worst. If I can push through it, I do. I made it through college and starting my first job. I was in the hospital for 4 days the first week of my job. I got out on a Monday night, drove two hours to my infusion center to get my first infusion, and then went to work the next morning. There is a lot that I push through. Sometimes, I need to lay in bed and be close to the bathroom and that’s okay. I hate having to cancel plans. I hate feeling so sick that I can’t do the things I was so excited to do. Not being able to push through it does not make me a bad friend or a flaky person. It makes me a wise patient because I know my limits and my body enough to know when I need rest and when to take care of myself.

3 “Have you tried reducing your stress? Maybe try yoga or something.”

While stress can certainly make my IBD worse, it does not cause it, and reducing stress does not treat it. My life can certainly be high stress. Being diagnosed with a chronic and incurable condition at 20 years old is definitely stressful, but I know how to manage my stress. If some stress-reducing yoga could stop the blood, the pain, the ER visits and hospital stays, and everything else that comes with IBD, I’d make a career out of it. But it’s not that easy. Knowing how to manage stress can help some symptoms during a flare up and help calm things down to a point. Stress management is not a cure for IBD and telling me to stop being stressed makes me more stressed.

2 “Why are you so tired? You haven’t done anything today.”

This is one of the most frequent things I hear. To an outsider, it’s true. I am absolutely exhausted all the time. I could sleep all day and lay in bed all weekend and go to work Monday morning feeling like I pulled a week full of all-nighters, but that’s what a chronic auto-immune disease will do. I had one doctor explain my fatigue like this: remember how tired you feel when you’re fighting off a cold or the flu? Like no amount of sleep will make you feel awake? You feel achy and worn down and your brain feels like mush? That’s how someone with IBD feels all the time. Instead of their immune system attacking a virus like the flu, it is constantly attacking itself – all day and all night. Those with IBD often have weak immune systems due to the medications they are on, making it more likely to get sick. Our bodies are fighting double just to function the way a healthy body can. So yes, I am tired all the time. I may have slept 14 hours the day before and had two cups of coffee, but I’m still tired and I could always use a nap. I wish I had the energy that a 21 year old should. That would mean I could go out and do what my friends can. However, I have accepted that my body has limitations and I need more sleep than the average person to function at the same level.

1“Just use oils! You need to stop pumping your body with all that poison!”

I will be the first to tell you, if an essential oil could make my immune system stop attacking itself, I would bathe in it all day and night. Sometimes, oils may help to an extent with headaches or nausea that come as side effects from medications I am on, but no essential oil or combination of oils will ever cure my disease. Of course I wish that something natural would work the way my immunosuppressant infusions do. Even a combination of 6 different medications at once did not help the way my current infusion medication does. It’s scary to have to pump a medication into my body every 6 weeks. Especially a newer medication that we do not know long term effects of. But it’s keeping me healthy and keeping me alive. And shaming me for how I am dealing with my chronic disease is never okay.

While all these are things I hear often and things that are definitely frustrating, I know they often come out of a place of not knowing how to respond and wanting to help. The most helpful thing someone can do is be there. Be there when I’m in remission and at my best, and be there when I’m laying in pain on the bathroom floor at my worst. Ask questions. Ask how you can help. Ask what my IBD means for me. Educate yourself. Don’t assume based on things you may have heard or things that work for a friend. In the end, be the kind of friend you’d want if you had IBD.