“When you have ulcerative colitis, it’s common to be concerned about how this condition might affect your personal relationships,” says Carol Rice, who moderates for an ulcerative colitis forum on HealingWell.com. “Who to tell, how much to tell, and when to tell are questions we’ve all had to deal with. For me, it took some time because I didn’t want to upset those closest to me.” But, she goes on to say, in her experience, family and friends actually feel better when you are open. Understanding this fact can be the motivation you need to take steps toward getting support for living with UC.
Here is Carol’s advice for getting the most out of your relationships with your family and friends.
Families and friends may need help to understand UC
“It’s hard for our families to comprehend just what our illness entails,” says Carol. “Because of this, we may hear misinformed comments like ‘If you’d just change your diet’ or ‘You’re just under too much stress!’” Carol points out that while these comments may be difficult to hear, they show that your family and friends need guidance to help them give you the kind of support and compassion you need.
- Direct your family to sources of information. “The more they know about ulcerative colitis, the better.” She suggests starting with the Crohn’s & Colitis Foundation of America Web site (CCFA.org) for information and links that can help your family better understand UC and learn ways to be helpful when you’re experiencing a flare.
- Ask for what you need. “Your family and friends want to support you; they often just don’t know how.” According to Carol, being direct and honest about how they can help is the best option. “Over time, being open about how you feel makes people more sensitive to your needs,” she says. “My friends and family can tell when I’m having a bad day, and they ask me what they can do to help before I even bring it up.”
Opening up may have some unexpected benefits as well. “Share what you know! When you become a source of information, you may wind up helping others you love get help.” Carol notes that UC is known to run in families, and some of your family members—or their children—may have the same issues. “By opening up, you’ll be able to point them in the right direction to get help sooner rather than later,” she says.
Be prepared to enjoy everyday life with the ones you love
“Leading an active life with ulcerative colitis is easier if you involve your family and get their help in planning ahead,” Carol says, noting that they will probably be more than happy to help out. “There are a number of things you can do that will help make the most out of your days together.”
- Plan for several small meals rather than large ones. “This may be easier on your digestive system, and some people think it helps to maintain more constant energy,” Carol says, pointing out that this is an easy change to incorporate into your family's daily routine.
- Stay hydrated. “Water or sports drinks are helpful to have on hand.” Carol suggests getting your doctor's recommendation and asking your family to help remind you to bring a bottle or two along when you're out and about.
- Plan ahead and be prepared. “The fear of having an accident causes a lot of anxiety for everyone and can even put your plans on hold,” Carol notes. “A little preparation can put everyone at ease so you can keep those plans.” She suggests using panty liners or adult protection, taking along an extra set of clothing and wet wipes, and considering a portable toilet in the car in case of emergencies.
- Carry a “restroom pass.” “Ask your doctor for a restroom pass,” Carol advises. “It can really help when there’s a line for the restroom or when a store or restaurant won’t let you use the facilities.”
You can have intimate relationships
“Many people ask, ‘When is the best time to tell the person you’re dating about your UC?’ I point to my own experience,” says Carol, who was already diagnosed with ulcerative colitis when she met her current husband.
Carol shares these tips that may be helpful in managing your closest relationship:
- Be straightforward. Explain UC in very simple, honest terms. “You may be surprised at the response, like I was when I opened up to my husband after our first couple of dates. He just said, ‘Well, everyone has something,’” Carol says. “It’s amazing how we perceive that we are the only ones with an illness.”
- Don’t hesitate to tell your partner when you’re not feeling well. “There are some days when you feel like you ‘hit the wall.’” Being honest and open will help manage your partner’s expectations. “You should never feel guilty for not feeling well.”
- Communicate about sex. According to Carol, you may be able to have an active sex life. “Most people want their partner to enjoy the experience. Open communication, not a guilty conscience, makes for a better, more satisfying relationship.”
This material is not intended to replace conversations with your health care professional team. If you have questions, comments, or concerns about your condition, please speak to your doctor or nurse.
