Living with ulcerative colitis (UC) can be challenging, both physically and emotionally. But it’s important to remember you’re not alone: Support from others can help you manage symptoms and boost your quality of life. Here’s how to build yours.
The Relationship Between Stress and Ulcerative Colitis
As with many ongoing illnesses, UC can affect different parts of your life. You may deal with constant bathroom runs and take several medications. You might also worry about certain foods causing pain. Surgeries may be part of your life, too. These and other issues can cause you to miss a lot of work, school, or life events.
Such challenges can trigger anxiety and stress, making you feel worse.
“Stress can definitely exacerbate the symptoms of the disease,” says Alyse Bellomo, MD, FACG, a gastroenterologist in Paramus, NJ.
Those who actively work to manage it often see major improvements in their disease symptoms and quality of life. But some people struggle to find support.
You might be embarrassed to talk about your condition. Shame and stigma still surround diarrhea and other UC symptoms.
“It's not really, you know, dinner conversation. So there is a lot of hesitancy,” says Bellomo.
Some fear other people won’t understand or are worried about burdening their loved ones.
“I am still not fully comfortable asking for help,” says Aberdeen, Scotland resident Liam Robertson. He’s been living with UC for over a decade. “But the longer you leave things, the worse they get, so the quicker you seek support, the better.”
Don’t Be Afraid to Lean on Loved Ones
Be honest
Social support provides a safe space for you to express your feelings, fears, and concerns without judgment. Being open about your condition can help your loved ones understand how it affects different parts of your life. The more they understand, the more patient and accepting they’ll likely be.
It’s also important to be honest with your doctor. Telling them about your symptoms and concerns can help them figure out the right treatment for you.
“It is so important to have a sense of trust,” says Bellomo. “It is a partnership: The [person] and the doctor need to work together for what's best for the [person]. And every [person] is different: There isn’t a one-size-fits-all formula for inflammatory bowel disease.”
Ask for help
UC can make it hard to do daily activities. But your friends and family are likely happy to help. They just might not always know how. Have an honest conversation about what kind of help you need and what kind of help they can provide. For example, they can:
- Go with you to doctor visits so you have a second set of ears
- Give you a ride to the grocery store or other places you need to go
- Help with household chores
They can also just spend time with you doing things you enjoy. That’s a form of support, too.
Remember, everyone has different talents, schedules, and resources. Spread out your support needs by playing to people’s strengths.
Talk to Other People with Ulcerative Colitis
Join a support group
It’s a great way to connect with others who understand what you’re going through. It also can help you feel less alone and improve your overall quality of life.
“Having people to speak to who have been there and done it is an incredible tool for comfort and advice,” says Robertson.
The Crohn’s & Colitis Foundation offers local support groups, camps for teens, athletic teams, and advocacy opportunities. Isabelle Mendez, of Mahwah, NJ, attended Camp Oasis, where she is now a counselor.
“You have people that you can rely on that may have been in your shoes or understand your situation,” she says. “That camp has really helped me gain not only a friend group, but also normalize the illness.”
Connect virtually
If you can’t attend in-person meetings or prefer to stay anonymous, consider joining an online community or forum. These platforms allow you to connect with others who share similar experiences and challenges.
“I discovered the online community later in my life, and it's been absolutely transformative for me,” says Robertson.
These sites also can be a great source of information. “People come to me now much more knowledgeable about what's going on than they were 20 years ago,” says Bellomo. “It really opens up a conversation and gives them some agency over what's going on.”
Manage Your Mental Health
“When I was initially diagnosed, there was no psychological support,” says Mendez. “Through my own experiences and hearing about the experiences of my peers, I realized that there was a lot of trauma from things like medical procedures and hospitalizations.”
In addition to counseling at Camp Oasis, she is also a doctoral student studying medical trauma in those with IBD. She hopes that her work will expand access to psychological treatment.
Ask your doctor for help if you’re feeling sad or hopeless. Consider options like:
- Cognitive behavioral therapy (also called talk therapy)
- Medication
- Hypnotherapy
- Mindfulness and meditation
“Even if you’ve been diagnosed for many years, it is never too late to begin mental health treatment,” says Mendez.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
National Health Service (U.K.): “Living with ulcerative colitis.”
Crohn’s and Ulcerative Colitis Companion: “How to Manage Ulcerative Colitis.”
Crohn’s & Colitis Foundation: “Coping strategies to improve mental health,” “Living with ulcerative colitis,” “Navigating Daily Life with IBD.”
Stress Health: “Impact of the COVID‐19 pandemic on inflammatory bowel disease: The role of emotional stress and social isolation.”
The Rome Foundation: “GastroPsych Directory.”
