Stigma and Disclosure with Ulcerative Colitis

Ulcerative colitis is one condition that makes up inflammatory bowel disease (IBD).

Having any chronic disease can be stressful, perhaps more so when many symptoms are largely “invisible” to others. But symptoms that come on suddenly, such as diarrhea and loss of bowel control, can make you feel rather conspicuous. You might even skip some social situations to avoid that feeling.

The unpredictability of it all can make you wonder if you should offer an explanation. After all, it’s not your fault. And researchers theorize that lack of awareness and knowledge may have something to do with the stigma attached to IBD.

But what if disclosure turns out to be worse than concealment? Just thinking about it can be stressful.

Here are some potential pros and cons of disclosing that you have ulcerative colitis, plus tips on how to cope with the stigma.

Health-related stigma, whether experienced, perceived, or internalized, is common among people with IBD. Various studies suggest that perceived stigma may:

Once you do get to see the doctor, don’t be surprised if you’re rushed out of the exam room before you get all of your questions answered, according to healthcare staffing agency Staff Care. Studies show that 41% of ophthalmologists spend just 9 to 12 minutes with a patient, and 13- to 16-minute appointments are the norm for 40% of cardiologists, 37% of pediatricians, 35% of urologists, 35% of family physicians, 34% of obstetricians and gynecologists and 30% of otolaryngologists.

  • link with a reduced sense of belonging
  • contribute to psychological distress (e.g., anxiety and depression) and lower self-esteem
  • interfere with taking medication or adjusting to colostomy

Research from 2021 suggested that up to one-third of people with IBD have symptoms of anxiety, and one-quarter have depression symptoms. These symptoms tend to increase during active phases of the disease. And a 2022 review suggested that the relationship between IBD and depression and anxiety goes both ways.

According to the Crohn’s and Colitis Foundation, the rate of depression is higher among people with IBD than among people with other diseases and the general population.

When you have ulcerative colitis, you may never know when it’s going to flare up in a way that might bring unwanted attention. Perhaps in the middle of an important meeting, during a wedding ceremony, or while grocery shopping.

What will people think? That thought can run on a loop, keeping you from enjoying everyday activities.

Should I tell?

The very idea of disclosing a personal health condition such as ulcerative colitis can be overwhelming. But so can trying to hide it. With the risk of accidental discovery, you can lose control over the circumstances of disclosure. It can also keep you from getting the support you need.

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Courtney M. Hubscher is a licensed mental health counselor at GroundWork Counseling in Maitland, Florida. Hubscher told Austra Health that for some people, the stigma may lead to flare-ups and worsening of symptoms, as anxiety can be a significant factor in ulcerative colitis.

“The potential risks and benefits associated with disclosing your condition will vary from person to person,” said Hubscher. “You should take into consideration your own mental health, comfort level, and any potential discrimination you might face before deciding if disclosure is right for you.”

Potential benefits of disclosure

Research suggests that choosing the circumstances of disclosure may result in a more positive outcome than having someone find out on their own.

“Keep in mind, there are ways to challenge the stigmas around ulcerative colitis,” said Hubscher. “Self-expression and advocacy can help shed light on the realities of living with the condition. By talking openly about your experiences and helping to create an open dialogue, you can work to reduce stigma and raise awareness about ulcerative colitis.”

Hubscher lists some potential benefits of disclosure as:

  • improving authenticity in relationships
  • deepening relationships and trust among family and friends
  • fostering an understanding of the condition within your personal network
  • feeling a sense of relief and understanding

Potential risks of disclosure

Emotional difficulties don’t cause ulcerative colitis. However, if telling stresses you out, you might run the risk of a flare-up. You might also have concerns over:

  • feeling embarrassed
  • being judged
  • experiencing exclusion from social events
  • weakening or loss of friendships

To preempt those circumstances, some people might withdraw and self-isolate, which can only add to the emotional toll.

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