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How to maintain your social life when you have IBD

Taking a walk is one of the most powerful ways to help manage IBD and also stay connected with friends.

By Elizabeth Millard

About two years ago, as Samantha Plevney was dealing with a major Crohn’s disease flare-up, she decided to tell her gastroenterologist how it was affecting her emotional health.

“I told him that I’m alive but I’m not living,” she recalls. “Not being able to see my friends because of the uncertainty of my health situation was making me feel worse. I think people with IBD, and their doctors, tend to focus on physical symptoms, and for good reason. But the mental-health effect that comes from social support is huge.”

Inflammatory bowel disease (IBD) encompasses two conditions—Crohn’s disease and ulcerative colitis—that are characterized by inflammation of the gastrointestinal tract, leading to symptoms such as diarrhea, abdominal cramping, fatigue and sudden weight loss. There are several treatment options, including anti-inflammatory and immune-suppressing medications, as well as surgery if other treatments aren’t working.

With these meds, many people go into remission, which means they won’t have symptoms that scuttle their social lives. But IBD is notorious for flare-ups, when symptoms come back in full force. Flare-ups may last days or weeks and can be mild or severe. Although people with IBD usually learn to identify possible triggers, flare-ups can also be unpredictable. That uncertainty is one of the reasons IBD is linked to higher levels of anxiety and depression, compared with those without the condition.

Social connections can help alleviate those feelings, but here’s the catch: socializing is much more challenging when you’re in the midst of a flare or concerned that one is looming. That’s why it helps to put some strategies into place in advance, suggests Plevney, who was first diagnosed eight years ago, at age 24, and is now a mental-health counselor.

“Maintaining those social ties should absolutely be considered part of your treatment and IBD management,” she says. “Having your social life feel optional, and only available when you’re feeling good, could lead to more anxiety that you’ll lose those friends for good. It’s worth the effort to keep those connections strong.”

Here are some tips to consider for making the most of your friendships, even during a flare-up:

Build a bigger support team

When you have just a couple of friends, it’s common to rely on them for significant emotional support, Plevney says. Try to stay aware of whether all your conversations are about your health. Of course it’s fine to talk to your close friends about your struggles, especially if you’re in a flare and plans need to change, but consider finding additional sources of support as well, she suggests. That might mean joining an online group for people who have IBD, seeing a therapist or tapping into your employee-assistance program.

“With close friends, it’s always important to have emotional support going both ways, but it’s also helpful to talk with people who may be going through the same thing, or with a therapist who can be more objective,” Plevney says. “That can take some pressure off your friends, and some off yourself as well, because it’s easy to feel like you’re talking too much about your condition. It’s easy to spiral from that point.”

With additional sources of support, when you are with your friends, you can focus on just enjoying one another’s company without feeling like they don’t “get you,” Plevney suggests.

Lean in to shared interests

Kelly Owens, director of patient education and outreach at the Feinstein Institutes for Medical Research in Manhasset, N.Y., was diagnosed with Crohn’s and colitis at 13. “Before that, I was an athlete with a big group of friends, so there was always that camaraderie,” she says. “When I came back to school after being sick for a month, everything was different, because now I was the sick girl. Everyone treated me like I was fragile.”

Although she wasn’t shunned or bullied, Owens felt different from her peers. Everyone was nice, she recalls, but they didn’t know what to talk to her about. It wasn’t until she went to college that she realized the power of having an identity separate from her diagnosis. She was no longer “Kelly, the girl with IBD,” but instead “Kelly, the one who always talks about books.”

“My longest-lasting relationships are rooted in common interests that have nothing to do with my IBD,” she says. “My advice for others in the chronic-illness community is to find out what fires you up. Really think about what you love, and find the people who can talk for hours about that.”

If you’re in the midst of a flare, you can do that from home by joining online groups centered on that topic, whether it’s debate over the latest Pulitzer Prize literature picks or fawning over rescued kittens.

Accept the ebb and flow

Even for those without IBD, friendships can run hot for a long time and then cool. Or a relationship may seem promising at first but never really spark into a true friendship. When you have IBD, those changes in friendship levels can be the norm, and Owens has developed an acceptance that eluded her when she was younger.

“My condition has made me quirkier than the average bear, because I’ve been through a lot in the nearly 20 years since I was diagnosed,” she says. “That’s made me more empathetic and loving in many ways, but it’s also helped me see not every friendship is built to last.”

That doesn’t mean making the effort to develop new friendships and deepen existing ones is a lost cause. Instead, that perspective helps Owens value her connections even more, because she doesn’t take them for granted. And when there’s more ebb than flow, it doesn’t create anxiety or discouragement as it once did.

Read full article here.

Posted on: October 11 2021

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As a mother with a son with Crohn's i found this website and articles very enlightening, the social isolation and symptoms are terrible for the sufferer and those that love them. Looking for a support group for my 24 year old son please?

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