Managing Relationships
How much should I open up about my ulcerative colitis?
Marci Reiss, a licensed social worker, is founder and president of the IBD Support Foundation. She specializes in helping individuals and their families with managing the psychological and social aspects of this condition. To meet Ms. Reiss, click here.
“I explain to people with ulcerative colitis that opening up to trustworthy people may provide an opportunity to get the assistance and understanding you need. You may be tempted to keep your diagnosis to yourself. But it's a good idea to think that through. In your journey through life with UC, you may very well need others' support.”—Marci Reiss, LCSW
Ms. Reiss believes that opening up in a safe setting can actually be a positive step for both you and the people you know and love. To give you some ideas about how and why opening up may help in managing relationships, she says:
Talking with your friends and family can help you get the support you need at home. Studies demonstrate that most people know little or nothing about UC until they or someone they know is diagnosed. That means the people who care and wish to support you may not understand what living with UC is really like. Family and friends generally want to help. Very often, they just do not know how. Although it may be embarrassing to describe your illness to others, explaining what your UC symptoms are will allow people to be more compassionate and helpful.
You may want to suggest resources, such as this Web site, to help them educate themselves on the issues and concerns related to your UC. A good place to begin is the section that discusses the basics of ulcerative colitis.
Sometimes, well-meaning family and friends may try to "fix things" for you, by showering you with articles and advice from questionable sources. If that happens, remember that their hearts are in the right place and they are just trying to help. Take the lead and channel their good intentions in a direction that is genuinely helpful to you.
Also, understand that your UC impacts your friends and family. We all have emotional reactions to illness—both to our own and to the illnesses of our loved ones. Your family and friends may have their own strong emotional reactions to the fact that you have UC. At times, this can make them less helpful. For example, if too many well-meaning "How are you feeling?" questions are forcing you to think about your UC when you don't want to, let them know. Explain nicely that you appreciate the concern and will tell them when you need them.
Telling the people you work with can be a positive way to get the support you need in the workplace. There's research that suggests that strong social support can reduce distress and positively affect health. In my experience, I have found that many people with inflammatory bowel disease (IBD) benefit greatly from a circle of love and support—both in and out of the workplace.
Only you can decide if and when to tell your boss or colleagues about your ulcerative colitis. In a supportive work environment, people with UC might be able to tell their bosses and coworkers about the struggles they endure and the accommodations they need. However, the world is not always sympathetic to people with illnesses, and it is very important to use common sense with regard to who, when, and how you disclose information about your UC.
With regard to your employer, try to predict how accommodating and compassionate he or she may be based on his or her interactions with other colleagues who have faced health challenges. Others may demonstrate understanding and flexibility. Most employers generally want their employees to be happy, as it maximizes productivity. Therefore, some of them may be willing to make necessary accommodations to assist with UC challenges.
Colleagues may sometimes be a better choice than the boss if you need people to "lean on" at work. They also have a boss to answer to and may therefore be more understanding. With colleagues as well, though, you may want to use caution. Some colleagues may be generally supportive of one another. Others may gossip about each other to try to get ahead. To support you, consider choosing colleagues who have demonstrated good character in the past.
Also, remember that since most people have no preconceived ideas about what UC means to an individual, what you say and how you say it will make all the difference. If you choose to disclose, be honest and clear about your illness and needs, and do so in a calm way. If you are very emotional in your presentation, people are more likely to be concerned that your work will be negatively impacted by your UC. If you present your illness as a challenge that you rise to, but still need some accommodations, people are less likely to see it as a potential barrier to your productivity and are more likely to assist.
So what's the bottom line? If you trust the people you work for and with, it may be helpful to tell them about your UC and ask for the assistance and accommodations you need.
Curious about your rights in the workplace? To become familiar with the provisions of the Americans with Disabilities Act (ADA) that prohibit discrimination based on a person's illness, click here.
Tips for managing relationships at home and work
At home
- Let those closest to you know about your UC—specifically, how it impacts your daily life and your moods
- Realize that family and friends have emotional reactions to your being sick, which can impact how they try to help
- Recognize that loved ones may be trying to help but may not know how
- Be clear about the support you need and want, and when you need and want it
At work
- If you need to tell your boss, explain your illness in a calm, professional way
- Be clear about the accommodations you need, such as a work space that is close to the bathroom
- When considering job opportunities, keep your UC in mind and choose a job that has some schedule flexibility
- During flare-ups, request assignments that do not require long periods of time away from bathroom facilities
