How to Stay Connected When You Have Crohn’s

Though Crohn’s disease comes with daily challenges, including trouble getting out and spending time with others, it’s important to strengthen existing relationships and make new ones. Keeping an active social life while managing Crohn’s symptoms may seem daunting, but it’s all about balance and communication. 

By rethinking the way you stay connected – and leaning on your family, friends, and others in the Crohn’s community – you can still spend time with those you love and build a strong support network.

Tips for Staying Social With Crohn’s Disease

Flare-ups and other symptoms may make you nervous about going out, but don’t let that stop you. All it takes is a little planning. Whether you’re going to a party, attending a work event, or trying to make a new connection, here are some tips to help you feel at ease and have a good time.

Manage Expectations

First and foremost, remember to be patient with yourself and give yourself flexibility. 

“I used to find myself constantly feeling guilty and wondering what other people must think of me for being flaky,” says Lauren Beach, 30, who’s lived with Crohn’s disease since she was 12. “But letting some of that go, and knowing that these things are out of your control, will help you in the long run. If the people you had to cancel plans with love you as a person, they will be understanding.”

To help manage expectations, Alexa Federico, 28, suggests talking to your inner circle about the potential for last-minute changes in plans. When people are aware of your situation, you’ll feel less pressure about shifting plans when you don’t feel well.

“There will be times when you need to cancel plans,” says Federico, a functional nutritional therapy practitioner who was diagnosed with Crohn’s at 12. “It’s a bummer, but always frame it that you’re doing what your body needs, and that is most important.” 

Dating and Socializing

When navigating social and romantic situations, you’ll have to take your Crohn’s symptoms into account, and with honesty and some preparation, you can spend time with others in a way that works for everyone.

Plan ahead before going out. To help put your mind at ease ahead of dinner with friends or a date, you may want to look up bathroom locations before or right after you arrive at your destination. There are even some apps, such as Flush, you can download to help find restrooms. 

Consider bringing a change of clothes and some moist wipes when you leave the house, too, if it makes sense based on your plans. If you’re going to a restaurant, check their website for a menu you can explore ahead of time.

Don’t be afraid to suggest date ideas that work best for you, too.

“Maybe it’s a restaurant that has food and drink you tolerate, or a non-food date,” Federico says. “Walks, shows, sports games, paint nights, or meeting in a park are great non-food dates. Pick areas you are familiar with so that there is less stress getting to the date and you know where the public bathrooms are nearby.”

Explore day-of events. It can be difficult to RSVP to events in advance when you don’t know how you’ll feel when the date arrives. Yoga instructor Ashara Keyes, 27, who was diagnosed with Crohn’s at 15, likes to use Eventbrite and the Meetup app to find events on the days she feels up to going out. “These apps help me feel like I still have a social life without the stress of having to commit or feel bad about not attending should I not be well enough,” she says.

Offer alternatives. You don’t always have to go out to have fun with those around you. If you’re not feeling well enough to leave the house, see if you can tweak plans. Invite people to come to you. Cook dinner together instead of going to a restaurant, for instance, or watch a movie at home instead of at a theater.

Take time to rest. “For dating, I always make sure to get plenty of rest the day before or the day of any plans – and after, depending on the activity,” says Surakhsha Afonso, 26, who was diagnosed with Crohn’s when she was 11. Listen to your body and set aside a day to recharge if you need it.

Share what you’re comfortable with. You may want to explain what you go through day-to-day to your close friends so they have a better understanding of your lifestyle. You can also let them know that your symptoms might keep you from going out with them all the time. 

When it comes to dating, it’s up to you to decide when to let your date know about your Crohn’s and how much you share. You may not want to bring it up on the first few dates and instead wait until a relationship becomes more serious. Or, like Beach, you may want to be open with the person from the start. 

“You can share as much or as little as you feel comfortable, but letting your partner in on what I consider to be a huge part of my life early on helps to navigate and eliminate what might otherwise be considered a tough conversation down the line,” she says.

Be honest with family and loved ones. Don’t be afraid to speak up and ask for support from your partner, family members, and close loved ones. They can help you form a strong support system and are often the first people to lend a hand with ongoing challenges like flare-ups.

“[Your family] may want to know how they can help, and I suggest asking them to check in with you, visit you at home instead of meeting out, or do FaceTime calls so you can still stay connected,” Federico says. Keyes adds that you can also let your partner help by letting them take small chores and tasks off your plate.

When it comes to extended family, Beach suggests staying in touch with phone calls, texts, emails, and social media when you aren’t able to see them in person.

Parenting

Parenting is full of ups and downs anyway, and it can be even more challenging to care for your little ones while managing your health. To make sure you and your family feel supported, consider some of these habits:

Prioritize your health. Parents, especially moms, can focus so much on taking care of the rest of the family that they forget to care for themselves. But tending to yourself first allows you to support others better in the long run. So make sure your usual Crohn’s care – medications, doctor’s appointments, blood tests – is at the top of your to-do list. 

Plan activities for the kids. Small projects or games that keep your toddlers busy can help when you’re fatigued or in pain. You may want to keep puzzles handy, for instance, or pre-pack a box with hands-on exercises or coloring books. That way your little ones can work on something on their own whenever you need to take care of yourself.  Keyes, the mother of a 6-year-old daughter, says YouTube is also a great tool to entertain kids when you need to take care of yourself. “Do not feel guilty,” she says. “You can put on something that is educational and still entertaining.”

Take breaks. Any parent knows this is easier said than done, but it’s even more important to manage stress and rest with Crohn’s. 

“On the days you are struggling with symptoms, pace yourself, look after [the] baby in ‘parts,’ and put your feet up whenever you get the chance, even if it’s when [the] baby is having a bottle,” says Afonso, who’s a new mom. For instance, she suggests doing all the essentials (diapers, feedings, etc.) as needed, but bath time can wait until after you get some rest. And it’s OK to sit with the baby and read books to entertain them; you don’t have to do physical activity every time.

Breaks can also be as simple as silencing your phone for a while or going for a short walk alone. Even if it’s just an hour to yourself, try to block off that time to take a breath and unplug a little. 

Making New Connections

There are plenty of ways to not only keep your relationships while you navigate Crohn’s, but to also grow your network to include people who understand what you’re going through.

Join a support group. One way to connect with others on the same journey is to check to see whether your area has a local Crohn’s & Colitis Foundation chapter. While these groups primarily hold focused sessions to talk through challenges and share personal stories, members often put together their own social events like picnics and lunches, community volunteer days, and family outings, too. These relationships and gatherings can be particularly uplifting since you can relate to one another.

Take advantage of digital networks. Connecting with others online can also help you build a different kind of community that helps answer questions and offers support. 

  • Check out online forums.
  • Connect with others on Instagram.
  • Join Facebook groups.
  • Download apps like Bezzy IBD to share tips, challenges, and more. 
  • Check organizations like the Crohn’s & Colitis Foundation or Hoag to find virtual support groups and peer-to-peer support programs online.