Maintaining friendships and a lively social life can sometimes be difficult for people with Crohn’s disease—but experts say they are essential to your overall health and wellbeing.
“If you choose your friends wisely, they are going to be your biggest supporters and advocates,” said Lori Plung, a Crohn’s patient, advocate, and support group leader at the UPMC Inflammatory Bowel Disease Center.
Crohn’s disease is a chronic inflammatory disorder that affects the bowels. Inflammation throughout the digestive tract can cause diarrhea, stomach pain, and weight loss, among other uncomfortable symptoms.
When those symptoms flare up, you may feel anxious about attending plans, worrying if there will be food you can eat or access to a bathroom. When you have to cancel plans, you may experience feelings of guilt, sadness, and frustration, as well as the fear of missing out, experts said.
“Those concerns are valid and understandable and shared by many people with IBD,” Patrick Buckley, MD, a board-certified psychiatrist at the UPMC Inflammatory Bowel Disease Center, told Health.
But those worries don’t have to stop you from having close friendships and a vibrant social life, Plung said. Here are the six tips experts suggest for people with Crohn’s to maintain a strong social circle.
Even if you’re not in an active flare, experts said it can be helpful to tell your friends about your Crohn’s if you’re comfortable sharing. That way, it’ll be easier to communicate your needs when you are having a bad Crohn’s day, and your friends will be able to support you.
“People should have that conversation when they’re ready, but that often leads to a closer, deeper friendship,” Buckley said.
When you are ready to share, think about why you are disclosing and what you’d like to reveal, advised Kathryn Tomasino, PhD, gastrointestinal psychologist and co-director of the Behavioral Medicine for Digestive Health Program at Northwestern Memorial Hospital.
For instance, if you can’t plan a trip with your friends for a given weekend because you have an infusion treatment, it might be a good opportunity to disclose your Crohn’s, Tomasino said, but that doesn’t mean you have to reveal all the details of your condition. “Some people are just people who share, and other people like to keep things private,” she added.
If you’re feeling anxious about telling your friends about your Crohn’s, Tomasino recommended writing down what you’re going to say or practicing it out loud to build your confidence. She also advised planning the conversation in advance so your friends are ready to receive the information.
Most people with Crohn’s have at least a few dietary restrictions to help with their digestive symptoms, which can make it difficult to manage food events like going to a restaurant or attending a wedding, experts said.
Crohn’s patients typically have two main concerns about food events, Bethany Doerfler, MS, RDN, clinical research dietitian at Northwestern Medicine Digestive Health Institute, told Health.
“First, they’re concerned about whether or not there’s going to be food that is going to sit well with them so that they can have an enjoyable night,” Doerfler said. “And our patients are equally burdened by asking family, friends, loved ones for those specific accommodations that they need.”
However, Doerfler said the fear of being a burden is often worse in your head. “When your requests are reasonable, people are actually really happy to make accommodations for you,” she said. “This is really standard now for diners and party-goers.”
Experts also recommended several tips to manage food events:
- Ask about food options or look at the menu ahead of time
- Make modifications
- Ask if you can pick the restaurant
- Bring your own food
- Eat before or after
On days when your symptoms are acting up, you may have to decide whether or not to attend an event. This will depend on what the plan is and what the flare entails, but when possible, experts recommended making adjustments so you can still participate.
For example, instead of spending all day with your friends, try to join them for an hour or two. “They just have to be open and honest that if they are having a bad Crohn’s day, they just might have to alter the plan a little bit,” Plung said.
However, tweaks may not work for every event. Ultimately, experts recommend listening to your body and not pushing yourself to socialize if you’re just not feeling up to it. Tomasino said thinking about your values can also help you decide whether to attend your plans.
“Are you following through with this plan because it’s something you want to do? Or because you feel pressured to do it, you’re worried about being judged if you don’t do it?” she said. “If you’re feeling pressured to do it, you probably won’t get as much satisfaction from it in the first place.”
Experts said many Crohn’s patients feel guilty when they have to cancel plans. “Often, people with IBD may feel that they’re letting other people down if they have to change their plans last minute because they’re struggling with symptoms,” Buckley said.
However, you can still show your friends that they’re important to you by making the effort to reschedule when you feel better, experts said.
“It could be something as simple as, ‘Hey, I’m having an IBD flare today. I really want to be able to do this activity or hang out with you, but I’m really not feeling well. Would you be open to rescheduling? I’m sorry that I have to cancel,’” suggested Jessica Naftaly, PhD, licensed clinical psychologist and instructor in the Division of Gastroenterology and Hepatology at the University of Michigan.
She also told Health that it can be easy to assume that your friends are angry or disappointed. Instead of letting these negative thoughts stir, Naftaly recommended having a discussion with your friends and actually asking how they’re feeling. They’re often more understanding than you might expect.
The fear of missing out affects everyone, experts said, and it can be painful for people with Crohn’s when they have to miss events because of a flare.
To deal with FOMO, start by staying off social media, Tomasino advised. “If you’re hospitalized because you’re flaring with Crohn’s disease, that’s not a great time to be spending as much time on social media, looking at what you’re missing out on,” she said.
Buckley also said it helps to remember that your symptoms are temporary. “It’s understandable to feel a little like you’re missing out or frustrated or isolated, but that’s the whole point of working with your health team,” he said. “These symptoms are not forever. This is a temporary thing. Your friends are waiting for you when you’re feeling better.”
Making friends with other people with Crohn’s not only provides socialization but also a support system that truly understands what you’re going through, experts said. “As much as our family and friends support us and understand the best that they can, they’re not living it,” Plung said.
Tomasino recommended connecting with other people with Crohn’s on social media. Plung also said finding a peer support group can be powerful, as they can validate your feelings and concerns while also sharing advice that has worked for them.
You can find support groups, events, and other resources for people with Crohn’s on the Crohn’s & Colitis Foundation and United Ostomy Associations of America websites.
