Living with Crohn’s disease can be physically and emotionally challenging. While friends, family members, and coworkers want to offer support and understanding, sometimes — even with the best intentions — they may say something that hurts more than helps.
Comments like “You don’t look sick,” or “Why not try changing your diet?” may come from a good place, but can leave someone with Crohn’s feeling misunderstood, dismissed, or even blamed for their condition.
Here are some common phrases to avoid, why they can be harmful, and alternatives you can use to let your loved one know you’re there for them.
1. ‘But You Don’t Look Sick’
Your loved one may not be in a wheelchair or on crutches, but they’re living with a serious immune condition. Telling them they don’t look sick can feel dismissive and minimize the difficulties they may be facing in managing their disease, says Laura Wingate, the chief education, support, and advocacy officer at the Crohn’s & Colitis Foundation, where she oversees support programming.
“Many people with Crohn’s disease face isolation, anxiety about flare-ups, dietary restrictions, and changes in weight or appearance, even while trying to keep up with everyday life and social commitments,” she says. Behind the scenes, they’re often grappling with urgent bowel movements, stomach pain, and the stress of going to work and social activities with these chronic digestive issues.
What to say instead: “I’m so sorry to hear this. If you feel comfortable, tell me more about Crohn’s disease and if I can help in any way.”
Many people with Crohn’s may feel embarrassed or uncomfortable talking about their condition, says Stephen Lupe, PsyD, a clinical health psychologist who specializes in gastrointestinal disorders and the director of behavioral medicine in the department of gastroenterology, hepatology, and nutrition at the Cleveland Clinic in Ohio.
Bowel health can feel like a taboo topic, so if your friend is opening up about their Crohn’s disease diagnosis, show empathy, interest, and a willingness to listen and learn. “It opens the door for the person to talk about what’s going on in a safer way,” Dr. Lupe says.
2. ‘You’re So Lucky! You Can Eat Whatever You Want and Stay Thin!’
This is an unhelpful comment Chelsea Cross, RD, a registered dietitian and personal trainer who has Crohn’s disease and works with clients with IBD, has heard many times. “The exact line was ‘I wish I could have Crohn’s too so I could stay thin.’ It’s frustrating, but we have to understand this comes from a place of unawareness,” she says.
Weight loss is a symptom of Crohn’s that highlights its dangers to well-being, not something to celebrate, she says. “This is not in our control, and often thinness comes with negative struggles and consequences,” she says.
What to say instead: “It’s great to see you! How are you doing?”
Don’t focus on your friend’s appearance — they may be feeling insecure or upset about their weight loss and hope others don’t notice, Cross says. “Compliment us in a different way outside of appearance,” she says.
And if they don’t talk about their weight, don’t point it out. Ask about other aspects of life instead, Lupe says. That could be work, family, weekend plans — anything else you’d normally talk about in a conversation.
3. ‘I Probably Have Crohn’s, Too. I Get the Worst Stomachaches Sometimes.’
This comment may be coming from an attempt to relate to your loved one, but it’s another way of dismissing their experience with IBD and minimizing the severity and complexity of the disease, Lupe says.
As mentioned, Crohn’s disease is a chronic immune condition and requires medication, nutritional support, or even surgery in some cases. It’s not as simple as getting stomach aches now and then. It’s an instance where friends and family without an IBD diagnosis truly can’t relate and shouldn’t try to, he says.
What to say instead: “How are you feeling today?” or “Is there anything I can do to support you?”
Open-ended questions give your loved one the opportunity to share as much — or as little — information as they’d like, Lupe says. It’s about providing a listening ear instead of trying to relate.
Do research on your own time about Crohn’s disease and share with your loved one what you’ve learned if they’re open to talking about it. And if you’re close, you could even consider asking if you can support them by attending an upcoming appointment, Lupe says. Use your time together as an opportunity to show your support and awareness about their condition.
“Validate their experience and provide genuine empathy,” Wingate says.
4. ‘Have You Tried … ?’
Many people with Crohn’s disease have heard every bit of unsolicited advice you could imagine, Lupe says. Comments like, “Have you tried cutting out gluten and dairy?” or “Why not try meditation?” can come across as dismissive and patronizing to your loved ones who have worked hard to manage their chronic disease.
Remember, they’re working with a team of specialists to treat and manage their Crohn’s disease, likely including gastroenterologists, registered dietitians, and mental health professionals, among others. They’re likely taking medications and making major lifestyle adjustments to keep their disease under control, he says.
What to say instead: “This sounds really difficult. Is there any way I can support you right now?”
Leave the advice to the experts, full stop, Lupe says. This is another important opportunity to be a good listener and supportive friend. Sometimes all your loved one needs is someone to talk to, not advise them.
If you’re making plans to get together, ask about food intolerances and foods they are comfortable with if eating is involved, Cross says.
Understand that Crohn’s disease symptoms can wax and wane, too. People can see improvements in symptoms for a time, then have a flare later on, Wingate says. “It’s important to remember that Crohn’s disease affects everyone differently and can change over time. Understanding that someone’s needs may shift day to day are vital in offering thoughtful support and alleviating feelings of isolation,” she says.
5. ‘You Go to the Bathroom a Lot” or “You’re Leaving Early Again?’
Crohn’s disease symptoms can flare at any moment, leaving your loved one in a lurch. They may have to cancel plans, leave early, or they may be making frequent trips to the bathroom, Cross says.
Don’t make them feel guilty or point out their absence, Lupe says. Bowing out isn’t a choice. It’s completely due to their health.
Your loved one may need to carefully plan out their workdays, social events, and vacations around their disease. They might pack spare clothes wherever they go, need to scope out facilities ahead of time, and often stay home to avoid high-stress situations, Lupe says.
“A lot of times, patients worry about being a burden. They don’t want the people around them to see they’re sick, so they push themselves,” Lupe says.
What to say instead: “Take your time. Please, don’t stress, and let’s reschedule when you’re ready.”
It’s crucial to be sensitive when you’re trying to be supportive of a friend with Crohn’s disease. Instead of guilt-tripping or expressing frustration because they’ve canceled plans, be patient and take the pressure off of them, Wingate says.
“Loved ones can offer meaningful support by being flexible, suggesting get-togethers at home, making sure venues have clean and ample restrooms, or simply asking how the person would like to be supported,” she says.
The Takeaway
- Crohn’s disease is a lifelong immune condition with symptoms that may be invisible to others around them, such as abdominal pain, chronic diarrhea, weight loss, and fatigue. While you often can’t see your loved one’s illness, know they are grappling with painful symptoms.
- Comments like, “You look great!” “I probably have Crohn’s disease, too,” or “Have you tried … ?” may come from a place of care, but they tend to dismiss your loved one’s experience with Crohn’s, which is a complex disease requiring intensive medical treatment.
- The best support comes from a place of empathy, patience, and curiosity, and asking open-ended questions lets your loved one share on their own terms.
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