Ulcerative colitis (UC) is an invisible illness. People around you can’t usually see your symptoms of fatigue, pain, and cramps. Even your close relatives and friends might not realize you have UC unless you tell them.
But UC isn't an easy condition to talk about. Some UC symptoms, including cramps and diarrhea, can be embarrassing to discuss, even with your family. But revealing your condition to the people who care about you increases their awareness of UC and gets you the help and support you need.
Research shows that people with UC who have strong social support from family and friends have a better quality of life than those who go it alone. Opening up takes time and trust, but once you tell your family and friends about the challenges you face, they can relieve some of the burden on you. You might even find that sharing your diagnosis brings you closer to your loved ones.
Why Should I Tell?
Opening up about your condition has a few benefits. UC can be very isolating. You're less likely to feel lonely if you have people around you who understand your situation. There will always be someone to call when you feel stressed or when you need help managing your condition.
When you talk to people about your UC, you help to spread the word about an illness that's often misunderstood. Every person who shares their experience breaks through some of the stigma that still exists around this condition.
Who Should I Tell?
Only you can answer that question. You decide who to tell about your UC and how much to reveal.
Start with your inner circle -- relatives and very close friends. Those are the people who know you best, love you, and have an interest in your health and wellness. You might also feel most comfortable opening up to them.
Anyone who will be your caregiver during flares definitely needs to know about your symptoms. And if you have a romantic partner, open communication is essential, especially when it comes to sex.
Once you’ve talked to those closest to you, branch out to the other trusted people in your life. You might tell other friends, co-workers, or neighbors who spend time with you.
Not everyone in your life will be equally supportive. If you need more help than your friends and family can offer, consider joining a UC support group. Through organizations like Crohn's & Colitis Foundation you can meet people who've been through the same kinds of challenges you have and have learned effective ways to deal with them.
How Much Should I Tell?
Share as much or as little as you're comfortable revealing. You might save the most details for the people you live with. They'll need to know how to help you manage flares and which foods aggravate your symptoms.
For your wider circle, share information on an as-needed basis. Co-workers might want to know why you visit the bathroom so often or why you sometimes leave work early. Friends will be curious about the reason you can't make it to dinner sometimes or why you bring your own food to parties.
Anyone who supports you should know the basic facts about UC, including:
- What UC is and what causes it
- What symptoms you have and how they affect your life
- How your symptoms change when you're in a flare or remission
- Which medicines you take
Certain situations require specific details. You might ask the host of a dinner party to serve certain foods or drinks. In a new relationship, you may find yourself explaining the logistics of sex with UC.
If you're not sure how to have a conversation about UC, get advice from your doctor or call the Crohn's & Colitis Foundation.
How Do I Ask for Help?
Before you ask for help, think about what you need most. Make a list of things you have a hard time getting done, such as grocery shopping or picking up your kids from school.
Choose the right person for each job. You could ask your partner to handle the laundry because they live with you, and ask a neighbor to pick up food from the grocery store on their way home from work.
Be specific in your requests. Instead of saying that you'd like "some help," say, "I need you to pick up my prescription from the drugstore on Thursday afternoons."
Support can come in other forms, too. You might have a friend call you once a week to see how you're feeling or make sure you're taking your medicine. Or you could ask a relative to accompany you to doctor’s appointments.
The goal in telling your friends and family about UC is to build a support network. Once that network is in place help will be there when you need it.
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BMC Gastroenterology: "Associations between disease activity, social support and health-related quality of life in patients with inflammatory bowel diseases: the mediating role of psychological symptoms."
Crohn's & Colitis Foundation: "Being IBDVisible," "Find a Support Group," "Friends and Family," "Navigating Daily Life with IBD."
Crohn's & Colitis UK: "Supporting someone with IBD: A guide for friends and family."
Journal of Clinical Psychology in Medical Settings: "The Experience of Self-Conscious Emotions in Inflammatory Bowel Disease: A Thematic Analysis."
The American Journal of Gastroenterology: "Social Isolation, Loneliness, and Caring for IBD Patients."