Crohn’s disease can cause a lot of anxiety and uncertainty. People who live with Crohn’s never know when their next flare-up might hit, or what they’ll be doing when it does.
Crohn’s disease is a form of inflammatory bowel disease (IBD) that causes inflammation in the gastrointestinal (GI) tract. People with Crohn’s experience sudden bouts of abdominal pain and diarrhea, along with symptoms like fatigue and weight loss.
It’s not easy for people who have Crohn’s disease to talk about it because it’s such a sensitive, personal subject. Telling friends and co-workers can be a real test of trust. Many people with Crohn’s are looking for allies to support them through the worst of their symptoms. Those not familiar with the disease might make some misguided comments.
We asked people from our Living with Crohn’s Disease Facebook community to share comments they’ve received that rubbed them the wrong way.
1. “How long do you have to do those infusions?” — Lexie Clark
There’s no quick fix for Crohn’s disease. Crohn’s is a chronic disease that requires long-term care. Infusion therapy can help control the overactive immune response that causes inflammation.
People with Crohn’s might get these drugs every few weeks until their disease stabilizes, and then only when they have a flare-up. But the regimen is different for everybody. It depends on how severe the disease is and how well it responds to treatment.
Asking someone when their treatment will end only reminds them that they’re in this for the long haul. And, spoiler alert, they probably won’t know the answer.
2. My boss continually makes annoying comments about my Crohn’s disease. — Anonymous
People with Crohn’s aren’t obligated to tell their employer about their condition. They have the right to say as much — or as little — as they feel comfortable doing. Yet, they may have to be open about it if they need special accommodations — like extra break time or a desk closer to the bathroom.
The Americans with Disabilities Act (ADA) stops companies from harassing or discriminating against people for revealing that they have a chronic illness. Making unwelcome comments to an employee with Crohn’s disease isn’t just hurtful, it could also violate their rights.
3. “You can eat junk food and not a salad? That doesn’t make sense.” — Anonymous
Diet is an important part of managing Crohn’s disease. Everyone with the condition has different dietary needs. Some people have to avoid certain foods, like high-fiber vegetables, because they irritate the digestive tract and make inflammation worse. Others lose their appetite and have to eat more calorie-dense foods to meet their daily requirements.
No diet for Crohn’s recommends “junk foods.” In fact, greasy, fried foods can aggravate symptoms. Giving someone a hard time about what they’re eating when they already have so much to worry about will only make them feel awful.
4. “Feel better soon.” — Dawn Pawnsford
Crohn’s disease is a life-long condition. People who have it won’t “get better soon.” They’ll learn to manage their symptoms over time.
5. “I know someone’s mailman who cured it with a diet.” — Monica Garcia
Medication and surgery can control symptoms of Crohn’s disease, but there is no known cure. Offering someone false hope in the form of an unproven treatment isn’t helpful.
6. “I know you’d feel better if you’d just lose weight and watch what you eat.” — Anonymous
Shaming someone about their weight will make them feel bad, and it won’t help their condition, either. Eating can be a real struggle when you have Crohn’s. Many foods can worsen symptoms. Weight loss is common due to diarrhea and other bowel issues. Research has suggested that being a little heavier isn’t necessarily a bad thing when you have Crohn’s. Some people with a higher body mass index (BMI) have a more stable condition.
7. “Maybe I can borrow it for a week or two and lose weight?” — Michelle O’Dea
If you’d like to borrow the intense abdominal pain, sudden bouts of diarrhea, rectal bleeding, and crippling fatigue that go with the disease, go right ahead.
8. “I know how you feel. I had diarrhea last week.” — Robbie Green Drummer
Having a stomach bug or food poisoning is in no way comparable to living with Crohn’s disease. A virus or food-borne illness usually clears up in 24 to 48 hours. People with Crohn’s experience constant, recurring bouts of severe diarrhea that happen without warning.
9. People are grossed out by Crohn’s disease. — Stacey Howeth
Sure, bowel movements and bodily fluids might bother some, but imagine if living with diarrhea and bloody stools. Telling someone that their medical condition grosses you out will only make them feel ashamed of something they have no control over.
10. “When people try to tell you what your GI and nutritionist have told you to do is wrong and that you should do something else instead.” — Stephanie Gail Williams
Gastroenterologists go through five to six years of specialized training to treat bowel diseases like Crohn’s. Nutritionists have completed several years’ worth of education in food and nutritional science. Unless you have a degree in one of these specialties, don’t try to contradict what the experts say.
11. “I’d hug you, but I don’t want to get what you have.” — Jordan McDonald
Crohn’s disease isn’t contagious. Although the exact cause is unknown, doctors believe genes and problems with the immune system set off the condition.
12. “I can’t take that prednisone.” — Jill Hudson Fletcher
Which drugs you can or can’t handle are irrelevant. For someone with Crohn’s disease, anti-inflammatory drugs can improve symptoms — and might even put them into remission.
13. “Do you have to talk about it so much?” — Emily Pierce
It’s hard to be open about a chronic, and sometimes embarrassing, disease. It’s also important to be aware of the burden people with Crohn’s disease carry. Talking to loved ones about their condition can help reduce stress. When someone with Crohn’s is willing to open up about their health, listen and be supportive. Don’t shut them down.