It’s not unusual for people with ulcerative colitis (UC) to experience stigma, shame, and other challenging emotions. Taking steps to manage these feelings can help support your well-being.
If you’ve experienced stigma or shame related to UC, you’re not alone. A
“[People with UC] often feel embarrassed to talk with others about gastrointestinal functions and the nature of what they experience,” Amanda Hyne, LCSW, an advanced social work practitioner at Mount Sinai Health System’s Susan and Leonard Feinstein IBD Clinical Center in New York, told Healthline.
“They can also feel judged or excluded when people don’t really understand why they have to do things like modify their diet, or feel fatigued,” said Hyne.
You might find that your symptoms or treatment needs interfere with certain activities at work or school, at home, or in your social life. This may negatively affect your sense of self or impact your relationships.
“Individuals may have concerns about being treated differently or worry about others’ perceptions about their condition if they need to cancel plans, modify activities, or ask for help,” Christina T. Gentile, PsyD, MA, ABPP, a clinical health psychologist at the Melvin and Bren Simon Digestive Diseases Center at UCLA in California, told Healthline.
But taking steps to manage stigma, shame, and other challenging emotions is important if you have UC. These strategies can help.
Learning more about UC may increase the knowledge, skills, and confidence you need to manage it.
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“Reading about UC, joining online advocacy groups, and discussing your concerns with your medical team can be empowering and help you make informed decisions,” said Gentile. “In addition, it can increase your confidence when discussing your condition and communicating your needs with others.”
You can learn more about UC from credible sources, such as:
You can also talk with your doctor and other members of your care team to learn more.
“Consult with healthcare professionals that you trust and feel safe with asking questions and medical advice,” said Gentile. “Keep up with routine check-ins and have honest communication about your symptoms and your thoughts about treatment needs.”
Let your care team know if you’re experiencing shame, embarrassment, or other challenges. They may recommend resources or refer you to another expert who can help.
Acknowledging your emotions is an important step in managing them.
“Living with a chronic condition is challenging and unpredictable. It’s normal to have a range of emotions, such as grief, anger, worry, and sadness,” said Gentile. “Try to notice and acknowledge your emotions.”
You might find it helpful to set aside time each day or week to write about your feelings and experiences in a journal.
You might also talk about your experiences with a trusted friend, family member, or other community member.
Self-compassion means treating yourself with care and understanding rather than harsh judgment or criticism. And a
“One way to practice this is to ask yourself how you would treat a friend or significant person in your life if they were going through the same situation — and try to extend that same approach to yourself,” said Hyne.
Remind yourself that everyone faces challenges in life.
You might also find it helpful to reflect on your strengths, achievements, and sources of support in your life.
“Highlight situations when you have persevered and when others have come through to support,” said Hyne.
Visit the Greater Good Science Center at Berkeley University of California to find other strategies for building self-compassion and resilience to stress.
Building a strong social support network may help limit feelings of isolation and loneliness.
“Surround yourself with support, whether that’s allowing yourself to truly express how you’re feeling to trusted family or friends or joining a support group to meet other people who are also navigating a chronic condition,” said Hyne.
You can talk with your care team or use the Crohn’s & Colitis Foundation online directory to search for support groups for people with UC.
You might also find it helpful to connect with a mental health specialist who has experience supporting people with IBD or other types of chronic conditions.
“Working with a therapist, psychologist, or other mental health professional can address feelings of shame and embarrassment, enhance coping with symptoms, and address psychosocial situations, such as concerns about bowel accidents in public,” said Gentile.
Gentile and Hyne recommend using the Rome Foundation Gastropsych Directory to find mental health professionals who have expertise supporting people with digestive diseases.
Practicing healthy lifestyle habits is important for supporting your overall health and well-being.
When you have UC, you can try:
- eating a nutrient-rich diet
- getting regular exercise
- getting enough sleep
Stress-relieving activities can also help build resilience as you face the challenges of UC. “Engage in activities that reduce stress, uplift mood, and improve well-being,” said Gentile.
To help reduce stress with IBD, you can try:
- spending quality time with loved ones
- taking part in hobbies or other activities you enjoy
- practicing relaxation techniques, such as guided meditation or deep breathing exercises
Talk with your doctor or other members of your care team to learn about other lifestyle habits that can help support physical and mental health.
Respecting your limits is important for minimizing stress and managing daily life with UC.
“Setting boundaries is essential for our well-being and vital for maintaining self-respect, supporting physical and emotional health, and fostering good communication in our relationships,” said Gentile.
She recommends asking yourself these questions:
- Are there certain situations that are draining or overwhelming and do not contribute to your well-being?
- Are there times when you push yourself to do more or feel guilty for saying no?
- Do you neglect your needs and prioritize others?
Reflecting on these questions may help you recognize your limits and identify where to set healthy boundaries.
It’s not unusual to feel self-consciousness, embarrassment, or other challenging emotions related to UC.
Learning more about UC may help you feel more confident in your ability to manage it. Acknowledging your feelings, practicing self-compassion, and seeking support may help you cope with the challenges UC brings. Practicing healthy lifestyle habits and respecting your limits are also important.
Talk with your doctor or other members of your care team to learn more about strategies and resources for managing UC, including how to cope with challenging emotions like stigma and shame.