If you have a friend or loved one with ulcerative colitis (UC), it’s natural to want to offer support and understanding. But even with the best intentions, it’s surprisingly easy to say something that unintentionally hurts more than helps.
Comments like “you don’t look sick” or “you’ve lost a lot of weight” may sound complimentary and caring to you, but to your loved one, these words may feel dismissive or like you’re minimizing their chronic illness.
Here’s a look at some common phrases to avoid — and what to say instead, so you can offer the genuine support you intend without accidentally adding to your loved one’s stress.
1. “Wow, you’ve lost so much weight!”
This is the No. 1 comment that causes people with UC to feel flustered, 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.
People with UC who are drastically losing weight and not looking like themselves are often very aware of it, and they’re typically hoping not to draw attention to it, Dr. Lupe says. “A lot of patients feel completely uncomfortable in their bodies. It doesn’t feel like their body anymore, and they have very little control,” he says.
To your loved one, weight loss — or weight gain — tied to UC is a sign of illness, not health, and isn’t something to compliment, says Laura Wingate, the chief education, support, and advocacy officer at the Crohn’s and Colitis Foundation, where she oversees support programming.
What to say instead: “It’s great to see you! How are you doing?”
People with UC often don’t want a pity party, so your tone when asking how things are shouldn’t be melancholy or apologetic, Lupe says. With this open-ended question, leave the ball in their court to open up about their health and how much they want to disclose.
If they don’t talk about their weight, don’t point it out. It may be a sensitive topic to talk about openly. Discuss work, family, weekend plans — anything you’d normally cover in a conversation. “Treat them as a whole person instead of just how they look or their disease. Talk about what’s going on in life and gloss over their appearance,” Lupe says.
2. “But you don’t look sick.”
If your loved one decides to open up to you about their UC diagnosis, try not to tell them they don’t look sick. This comment can feel dismissive because it doesn’t acknowledge the gravity of your loved one’s health, Wingate says.
UC is known as an “invisible illness” — people with the condition may look fine on the outside but they may be struggling with severe symptoms internally along with the anxiety of managing their health, Wingate says.
What to say instead: “Thank you for sharing this with me. Please let me know if I can help in any way at all.”
While it may seem kind to remind your loved one that they don’t look sick, it’s best to keep that thought to yourself, says Sunanda Kane, MD, a professor of medicine in the department of gastroenterology and hepatology at the Mayo Clinic in Rochester, Minnesota. Your loved one is opening up to you about something that’s affecting every part of their life — health, relationships, well-being — so it’s best to listen with empathy.
“Because this affects an organ that is on the inside, it can be hard to know when someone has UC. If they tell you they do, the best thing to do is thank them for their transparency, ask them if there is anything they want you to do, and then move to another topic,” Dr. Kane says.
You can also acknowledge their struggle, even if it isn’t obvious, Wingate says. “Try saying, ‘I know you may not always feel well even if it doesn’t show. How are you feeling today?’”
3. “I probably have IBS, too. I get the worst stomach aches sometimes.”
UC is a type of inflammatory bowel disease (IBD), but it’s often confused with another digestive condition called irritable bowel syndrome (IBS), Wingate says.
“While both can cause discomfort, UC is a chronic, inflammatory disease that can lead to serious complications, including hospitalizations and surgery,” Wingate says. This comparison can make people feel like their experience is not being acknowledged, she says.
It overlooks the chronic diarrhea, abdominal pain, fatigue, and flares your loved one may be dealing with. “It’s normal to want to relate, but this can feel insensitive,” Lupe says.
What to say instead: “I’d like to understand what you’re going through if you feel like sharing.”
Emotional intelligence and empathy are the way forward when talking to your loved one, Lupe says. Use your time together as an opportunity to gain awareness about their experience with the disease. Lupe suggests starting with something as simple as “I don’t know what ulcerative colitis is. Can you tell me more about it?” And if they prefer not to, move onto another conversation.
4. “Have you tried …”
Unless someone directly asks for suggestions, it’s best not to offer unsolicited advice, especially when it comes to a chronic illness you may not be familiar with. You may mean well when you make comments like “Have you tried cutting out gluten and dairy?” or “What about probiotics or meditation?” but they can feel dismissive or patronizing to someone managing a complex autoimmune condition like UC, says Lupe.
“Patients’ friends have said, ‘Why don’t you eat better?’ and it’s not that simple. This is an autoimmune condition that attacks the intestines and can get worse, then better, then worse, then better,” he says.
Many people with UC have worked extensively with their professional healthcare team, including gastroenterologists, registered dietitians, and mental health professionals, to figure out a treatment plan that works for them. It often requires immunosuppressive medications, regular infusions, and major lifestyle adjustments. Oversimplifying it ignores the daily effort and resilience required to manage the condition, Lupe says.
What to say instead: “It sounds like you’re really doing everything you can. Is there any way I can support you right now?”
This is another opportunity to be an attentive family member or friend and a good listener. Sometimes your loved one just needs someone to talk to, not someone to advise them. They have a team of specialized support for that, Lupe says.
5. “You’re canceling again?” or “You’re leaving early again?”
UC symptoms can be unpredictable, and needing to cancel plans or leave early isn’t a choice; it’s often necessary for health reasons, Wingate says.
Unbeknownst to you, your loved one may need to plan out their workdays, social events, and vacations around their disease, from packing spare clothes wherever they go to choosing transportation options with readily available washroom facilities. Most people end up staying home to be close to the bathroom, Lupe says. It’s a high-stress, isolating experience.
“Anxiety and depression are diagnosed among patients with IBD because it’s so hard to juggle everything,” Lupe says. “You’ve got a gut you can’t trust, and you may have to run to the bathroom at any given second. It’s embarrassing.”
What to say instead: “No worries at all. Please, don’t stress, and let me know if you need anything.”
Now is the time to practice compassion. Instead of expressing frustration and guilt-tripping, try showing understanding and take the pressure off of them. Tell your loved one not to worry about canceled plans or calling it an early night. They’re not feeling well and need to get home.
You can take it a step further by asking what would make it easier for a get-together. That could be meeting at their house or at a venue they’re comfortable with, or catching up on a video call. “Leave it open and let them suggest what they’re comfortable doing,” Lupe says.
The Takeaway
- Ulcerative colitis is often invisible, and well-meaning comments can sometimes unintentionally hurt and minimize what people with UC are going through.
- Avoid comparisons, compliments about weight loss, or providing unsolicited advice.
- Empathy, openness, and flexibility go a long way. Let your loved one lead the conversation and offer support without pressure.
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