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
- 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
According to the Crohn’s & 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.
Courtney M. Hubscher is a licensed mental health counselor at GroundWork Counseling in Maitland, Florida. Hubscher told Healthline 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.
There’s strength in knowledge, so learn all you can about ulcerative colitis. Work with your doctor to manage the condition as much as possible.
If you have symptoms of anxiety or depression, it’s important to get care. You can start by speaking with the physician who treats your ulcerative colitis. If necessary, they can refer you to a mental health professional familiar with the psychological aspects of living with IBD.
Some therapies that may help are:
- mindfulness-based therapy
- cognitive behavioral therapy
- deep breathing (diaphragmatic breathing)
- progressive muscle relaxation
It might seem so at times, but you’re not alone. And Hubscher believes it can help to connect with others who have IBD. Others who “get it” can provide support and information on coping with the challenges of life with a chronic condition.
“Support groups, either online or in person, can be a great source of solace,” said Hubscher.
Here are a few ways to get started:
- Crohn’s & Colitis Foundation’s local chapters and online community
- IBD Support Foundation’s online community
- Smart Patients’ inflammatory bowel disease community
- United Ostomy Associations of America’s support group finder
Once you find a good fit, you might soon be in a position to help others, which is good for you, too.
You have ulcerative colitis through no fault of your own, but there’s a certain stigma surrounding digestive health conditions.
So, if you’re feeling stressed out, you’re not alone. If you have symptoms of anxiety or depression, it may be time to speak with your doctor. You can also ask for a referral to a mental health professional who treats people with IBD.
Disclosing your condition to others can help break through the stigma. It can open the door to getting the support you need. But you get to decide how much you want to share and who you want to share it with, if at all. Consider your own mental health first.
You might also find it helpful to join a support group to connect with others who understand because they’re living it too.