Life with IBD
You've been living with ulcerative colitis for months or years. You know the drill: the urgent sprints to the bathroom, the fatigue that settles into your bones, the medications, the blood draws, the colonoscopies. But when someone asks what's wrong, you freeze. Where do you even start? Ulcerative colitis, or UC, is one of those conditions where the gap between what you experience and what other people see is enormous. An estimated 1.25 million Americans live with UC, yet most people have never heard of it. That makes every explanation feel like starting from scratch, and the emotional labor of translating your reality into terms someone else can grasp is exhausting. Here's how to do it well, in different situations, without draining yourself in the process.
Start with the Basics: What UC Actually Is
Most people have no framework for understanding UC. The most effective starting point is a clear, factual description. UC is a chronic autoimmune disease in which the immune system attacks the lining of the colon and rectum, causing inflammation, open sores, and bleeding. It's not a stomach bug. It doesn't go away on its own. And it requires ongoing medical treatment, often including immunosuppressive medications, steroids, and sometimes surgery.
The key distinction to make early is that UC is a disease of the immune system, not a digestive sensitivity. Your body is attacking itself. That framing helps people understand why the condition is serious, why you can't simply eat differently and feel better, and why it's unpredictable.
A simple version might sound like: "I have a chronic autoimmune disease called ulcerative colitis. My immune system attacks the lining of my colon, which causes inflammation, bleeding, and a lot of pain. It cycles between flares, where symptoms are severe, and remission, where things calm down. There's no cure."
The IBD vs. IBS Conversation
The single most common misconception you'll face is people confusing inflammatory bowel disease, or IBD, with irritable bowel syndrome, or IBS. The names sound similar, and most people outside of medicine don't know the difference. But these are fundamentally different conditions.
IBS is a functional disorder. It causes discomfort, bloating, and irregular bowel habits, but it doesn't cause structural damage to the digestive tract. IBD, which includes both UC and Crohn's disease, is an autoimmune condition that causes visible inflammation, ulceration, and tissue damage. IBD can lead to serious complications including strictures, fistulas, and colorectal cancer. IBS does not.
When someone says "Oh, my cousin has IBS," a useful response is: "IBS and IBD are actually very different. IBS is uncomfortable, but IBD causes physical damage to the colon. My immune system is creating open sores in my intestine. That's why I need immunosuppressive medication and regular colonoscopies to monitor for complications."
Tailoring What You Share to the Relationship
You don't owe everyone the same level of detail. How much you share should depend on the context and what you need from the relationship.
For casual acquaintances or new social contacts, brevity works well. Something like: "I have a chronic health condition that sometimes flares up and affects my energy and availability. I appreciate your understanding when I need to cancel or leave early." You don't need to name the condition if you don't want to. You're explaining behavior, not diagnosing yourself publicly.
For close friends and family, more context helps them support you. Explain what a flare looks like, what your daily medication routine involves, and what you need from them. Be specific: "During a flare, I might need to use the bathroom 15 to 20 times a day. I may not be able to eat much. I'll be exhausted. The most helpful thing you can do is not take it personally when I cancel plans, and check in without making a big deal out of it."
For employers and coworkers, focus on function and accommodation. Research from the Crohn's & Colitis Foundation shows that 91% of IBD patients need at least one workplace accommodation during severe symptoms, yet many never ask. You have legal protections under the ADA if your employer has 15 or more employees. A workplace conversation might sound like: "I have a chronic medical condition that occasionally requires me to step away quickly or work from home. I'd like to discuss a few simple accommodations, like seating near a restroom, that would help me stay productive."
Handling Dismissive Responses
"Have you tried cutting out gluten?" "My friend cured her gut issues with probiotics." "You just need to manage your stress better."
These comments usually come from a good place, but they minimize the reality of living with a serious autoimmune disease. Diet can play a supportive role in managing symptoms, but as the Crohn's & Colitis Foundation notes, it varies enormously between individuals and requires guidance from an IBD-focused dietitian. Diet does not cause UC, and it cannot cure it.
A measured response: "I appreciate the suggestion. UC is actually an autoimmune disease, so my immune system is the core problem, not my diet. I work closely with my gastroenterologist on treatment, and I'm on medication that targets the immune response directly. Food choices help manage some symptoms, but they can't address the underlying disease."
You don't need to debate. You're correcting a misunderstanding, not defending yourself.
Why UC Feels So Isolating
UC is an invisible illness. On your worst days, you might look completely fine. That disconnect between appearance and experience creates a particular kind of loneliness. People struggle to take seriously what they can't see, and the symptoms of UC, primarily involving the bathroom, carry social stigma that conditions like diabetes or arthritis don't.
Research published in Inflammatory Bowel Diseases found that disease-related stigma in IBD patients is associated with higher rates of depression, anxiety, and decreased quality of life. The study also found that disclosure, while difficult, tends to reduce stigma from others over time. Telling people what you're dealing with is hard, but keeping it entirely hidden often makes the isolation worse.
That said, disclosure is a personal decision. Nearly half of IBD patients choose not to disclose their condition, often because they fear professional consequences or social judgment. There's no right answer. But if you do choose to share, having practiced language ready makes the conversation less stressful.
Practice Before You Need It
One of the most practical pieces of advice from patient advocates is to rehearse your explanation before you need it. Write down a two-sentence version and a five-sentence version. Say them out loud. It feels odd, but the thing that feels overwhelming becomes manageable when you've already found the words.
Your two-sentence version might be: "I have ulcerative colitis, which is a chronic autoimmune disease affecting my colon. It causes unpredictable flares that can be severe, and I'm on ongoing treatment for it."
Your five-sentence version can add context about what flares look like, what you need from the person you're talking to, and what they can do to help.
The goal isn't to make other people fully understand what UC feels like. That may not be possible. The goal is to give them enough information to respond with empathy instead of confusion, and to set expectations that make your life a little easier.
Sometimes data explains better than words. Aidy's visual symptom summaries can help friends and family understand what you're going through when your own words feel insufficient.