Anyone living with a chronic illness like inflammatory bowel disease (IBD) will tell you that it’s challenging. The condition, which includes Crohn’s disease and ulcerative colitis (UC), impacts every corner of your life, from your daily routines to the basic relationship you have with your own body. What can make it more complicated is the way others, both family and strangers, might treat you when they learn that you have IBD.
A Confusing Diagnosis
The thing is, IBD symptoms are sensitive subjects and uncomfortable to talk about. And all of the misconceptions and assumptions about the disease can make things more uneasy. Sometimes, even those living with IBD can be confused about what the disease is and what it isn’t
“I thought it was an ‘old man thing,’ ” says Stefan Thomas, 50, a U.K.-based author and speaker. Diagnosed with UC at the age of 27, Thomas had never heard of the disease beyond a few older relatives in his family having what he said was politely called “stomach problems.”
For Ijmal Haider, 34, the owner of a creative and architectural design firm in Calgary, Alberta, who was diagnosed with UC 5 years ago, it was the chronic part of the illness that didn’t compute at first. He thought he could cure his condition simply by taking the right combination of medications.
The first 2 years of UC were a roller-coaster ride, Haider says, because he started to realize there was no magic pill or quick fix for his illness. And some of the medications he was taking to manage it had major side effects. “Certain steroids can take a big toll on your body and emotional well-being.”
Don’t Ignore Mental Health Aspects
The impact IBD can have on your mental health is another thing that needs to be discussed more, says Jenna Farmer, 35, creator of A Balanced Belly, a blog about life with Crohn's disease, based in the U.K. “I don't think anybody realizes just how much anxiety living with a chronic condition can cause, along with the stigma of bowel issues,” she says.
Thomas remembers the early years of managing his UC as distressing and depressing. “I was very anxious on trips out, always making sure that I was within reach of a toilet, no matter where I was, which in itself is quite upsetting, disabling, and makes you think, ‘Will I ever return to normal life?’ ”
Thomas says the one misconception he finds most frustrating is when people mistake IBD for IBS (irritable bowel syndrome). “It happens all the time,” he says. “I can understand why someone might get confused.” But the infuriating part, he says, is the way people downplay how serious and severe IBD is by chalking it up to having a “funny tummy” that can be easily remedied by cutting out dairy. “I'm not diminishing the impact of IBS, but IBD and IBS are completely different.”
The best way to clear up many of these false impressions about IBD is by having more open and respectful conversations with people living with the disease. But just because it’s the best way doesn’t mean it’s easy. As Kate Petty, 37, sees it, it’s in our nature to avoid talking about things that scare us.
“I think human beings in general tend to minimize pain in other people, because we're all afraid of illness and injury, and so we want to push it away.” Petty, a Baltimore-based writer, was diagnosed with Crohn’s disease at 16 but has been in full remission for the last 14 years.
Instead of asking someone with IBD questions that could come across as prying, Haider suggests a better way. “One of the most powerful questions that I get asked by people who don't have IBD is, ‘How can I support you?’” he says. “It’s a dynamic question that allows us -- people dealing with the illness -- to dictate exactly how others can help, because the support I need changes in each given moment.”
Once you get past some of the shyness around the traditionally “embarrassing” symptoms, most people with IBD are comfortable talking about their experience, Petty says. “Ask open-ended questions about the condition, like how a person is managing it, and how they're feeling on any given day.”
Learn All You Can
Educating yourself is also key, Farmer says. “Taking just a few minutes to research my condition and the medication I’m taking is a massive help.” It shows that you care about understanding what it’s like living with IBD.
The more folks living with IBD started to talk about it, the more it helped people like Thomas. “I realized that it wasn't just me, and that the other people were managing their condition and just getting on with their lives.”