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.
Embrace your alone time
Although it may sound counterintuitive that you can enjoy social time more if you embrace being alone, it’s not as contrary as it seems, says Dr. Ashkan Farhadi, a gastroenterologist at Memorial-Care Orange Coast Medical Center in Fountain Valley, Calif.
“During the pandemic, we’ve seen patients with IBD learn to appreciate the break from social events, work gatherings and going out,” he says. “Don’t feel guilty if you’ve been -flourishing because of that. See it as an opportunity to learn why.”
That type of introspection can lead to a deeper understanding of what you love about social time—and what you don’t. Then you can bring that into your friendships, Farhadi says.
“When you feel comfortable alone, rather than isolated and lonely, you’re less likely to see social connections as filling a need and more as a fun way to spend time,” he says.
Expand your de-stressing tactics
Similar to seeing alone time as a reset, focusing on lowering stress in general can make time with friends more meaningful as well as reduce the risk of flares, says Dr. Harry Thomas, an IBD specialist at Austin Gastroenterology in Texas. Stress-relief strategies can help lower anxiety and depression, while boosting quality of life.
Addressing the stress that comes from stigma as well as uncertainty about when a flare might happen takes a comprehensive approach, Thomas says. That might mean creating a gratitude or meditation practice, trying yoga or tai chi, doing deep-breathing exercises, getting into nature more often or talking with a mental-health professional.
“Of all the factors that are likely to cause more flares, stress is right at the top,” Thomas says. “That creates a ripple effect that makes it worse, like poor sleep, more anxiety, unhealthy eating choices and lack of interest in being social.”
Not only do these stack on top of one another to affect your social life in negative ways, but they can also add to a feeling of stigma, Thomas says. That might make you more hesitant to tell friends what’s going on, pushing yourself further away from them.
“Research has suggested more than any other chronic disease, IBD has the most stigma attached to it, even more than sexually transmitted diseases,” Thomas says. “With something like lupus or cancer, many people put that on social media, and the support they get helps lower their stress. But IBD is different: there’s far too much silence about it.” That, in turn, might make you feel so stressed that you don’t even want to see your friends. “Taking a step back and addressing that tension, rather than forcing yourself into activities, can serve the dual purpose of making time with your friends more satisfying while also helping you manage your IBD more effectively,” suggests Thomas.
Take a walk together
With so many potential fitness options in person and online, a walk may seem almost quaint at this point. Yet Farhadi says it’s one of the most powerful ways to help manage IBD and also stay connected with friends.
“In terms of preventing flare-ups, moderate exercise that is low-impact is ideal, as well as stress relief and getting social time,” he says. “A nice long walk checks all those boxes.”
Another option is to find an activity that is new to both you and a friend, which can provide a feeling of playfulness that helps squash anxiety, he adds. That might be indoor rock climbing, aerial yoga, dance class, stand-up paddleboarding or an adventure ropes course.
One more approach is to build a sense of purpose with friends by volunteering in an outdoor activity—like hiking-trail maintenance or landscaping for elderly neighbors—or doing a charity walk that raises money for causes that resonate with both of you.
“You’re getting physical activity, which is important for IBD, and you’re sharing an experience with your friend, not just sitting and talking about your condition,” says Farhadi. “Those are the memories that last.”
How to support a friend with IBD
Whether a friend has just gotten diagnosed with IBD or your friendship is on the newer side, here are some ways to keep the connection strong:
Let your friend set the direction
Asking how someone is doing is a given, but let your friend take it from there. If they opt to steer the conversation toward IBD challenges and want to make that a major discussion topic, then it’s great to show your support, Kelly Owens says. But if you get a shrug and a noncommittal answer, that usually means they’re tired of thinking and talking about it. Veer toward other subjects instead.
Build flexibility into your plans
Unless you’ll be attending a specific event like a concert, be ready to modify your get-together, Owens suggests. That might mean seeing a movie at home instead of going to a theater, or grabbing takeout instead of trying that new restaurant in town. Or it may mean switching up an in-person visit altogether and either trying a different day or catching up via phone or video call.
Be a friend, not a health coach
Unless you’re actually a health coach and your friend with IBD has asked for advice, it’s best to stick to being a pal, Owens says: “If you’ve researched a treatment or study, I guarantee your friend with IBD has too. Don’t try to fix them—they’re working on it.” The danger here, she adds, is that this approach makes it seem like your friend is a problem to be solved, when all they really want is just to be treated like a friend.
Get creative with staying connected
Watch a show together—but in different homes, and chat about developments over text or a call. Play a game—but choose one that’s online and brings a group together. One benefit of the pandemic pivot has been finding clever ways to stay connected, and you can draw on those to support a friend who may be going through an IBD flare.