Crohn’s disease: staying connected

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Although Crohn’s disease comes with daily challenges, including difficulty getting out and spending time with others, it’s important to strengthen existing relationships and build new ones. Maintaining an active social life while managing the symptoms of Crohn’s 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 loved ones and build a strong network of support.

Tips for staying social with Crohn’s disease

Flare-ups and other symptoms can make you nervous about going out, but don’t let that put you off. 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 comfortable and have a good time.

manage expectations

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

“I used to feel guilty all the time and wonder what other people must think of me because I have scaly skin,” says Lauren Beach, 30, who has lived with Crohn’s disease since she was 12. “But letting go of some of that 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 understand.”

To live up to 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 to change plans when you’re not feeling comfortable.

“There will be times when you have to cancel plans,” says Federico, a functional nutrition therapy practitioner who was diagnosed with Crohn’s disease when he was 12. “It’s a shame, but always frame it that you’re doing what your body needs, and that’s what matters most.”

dating and socializing

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

Plan ahead before you go out. To calm down before a dinner with friends or a date, you should check where the bathrooms are before or right after you arrive at your destination. There is Even some apps, such as B. Flush, you can download to facilitate the search for toilets.

Also, remember to take a change of clothes and wet wipes with you when you leave the house if it makes sense based on your plans. If you go to a restaurant, check the website for a menu to explore in advance.

Don’t be shy about suggesting date ideas that work best for you too.

“Maybe it’s a restaurant that offers food and drink you can tolerate, or a non-food date,” says Federico. “Walks, shows, sports games, painting nights, or meet-ups at a park are great non-food dates. Choose areas you are familiar with so there is less stress in getting to the date and you know where the public restrooms are nearby.”

Explore the day of events. It can be difficult to book events in advance if you don’t know how you’ll feel when the date comes. Yoga teacher Ashara Keyes, 27, who was diagnosed with Crohn’s disease when she was 15, likes to use Eventbrite and the Meetup app to find events for the days she wants to go out. “These apps help me feel like I still have a social life without the stress of having to commit or feeling bad about not having to participate when I’m not doing well enough,” says you.

offer alternatives. You don’t always have to go out to have fun with those around you. If you don’t feel well enough to leave the house, try changing your plans. Invite people to come to you. For example, cook dinner together instead of going to a restaurant, or watch a movie at home instead of going to the cinema.

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

Share what you are comfortable with. You might want to explain to your close friends what you go through every day so they understand your lifestyle better. You can also let them know that your symptoms may prevent you from going out with them all the time.

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

“You can share as much or as little as you’re comfortable with, but sharing early on with your partner in what I consider a big part of my life helps direct and eliminate what might otherwise be difficult.” conversation could be viewed. ” She says.

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

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

When it comes to extended family, Beach suggests using phone calls, text messages, email, and social media to keep in touch when you can’t see them in person.

education

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

Prioritize your health. Parents, especially mothers, can become so focused on taking care of the rest of the family that they forget to take care of themselves. But if you take care of yourself first, you’ll be better able to support others in the long run. So make sure your usual treatment for Crohn’s — 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 they are tired or in pain. For example, you might want to have jigsaw puzzles handy, or prepack a box with hands-on exercises or coloring books. So your little ones can work on something independently when you have to take care of yourself. Keyes, the mother of a 6-year-old daughter, says YouTube is also a great tool to keep kids entertained when they need to take care of themselves. “Don’t feel guilty,” she says. “You can come up with something that’s educational yet entertaining.”

take breaks. Any parent knows that this is easier said than done, but managing stress and resting with Crohn’s disease is even more important.

“On the days when you’re struggling with symptoms, stand back, take care of yourself [the] Baby in ‘parts’ and put your feet up whenever you get the chance, even if it is when [the] Baby gets a bottle,” says Afonso, who is a new mom. For example, she suggests doing all the essentials (diapers, feeding, etc.) as needed, but bath time can wait until you get some rest. And it’s okay to sit with the baby and read books to keep him entertained; You don’t have to be physically active every time.

Breaks can also be as simple as muting the phone for a while or taking a short walk alone. Even if it’s only an hour for you, try to block out that time to catch your breath and switch off a little.

Make new connections

There are many ways to not only nurture your relationships while navigating Crohn’s, but also to expand your network with people who understand what you’re going through.

Join a support group. One way to connect with others on the same trip is to see if there’s a local in your area Chapter of the Crohn’s & Colitis Foundation. While these groups primarily hold focused sessions to talk about challenges and share personal stories, members often create their own social events as well, such as picnics and lunches, community volunteer days, and family outings. These relationships and gatherings can be especially uplifting as you can relate to each other.

Benefit from digital networks. Connecting with others online also allows you to build a different type 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 Crohn’s & Colitis Foundation or Hoag to find virtual support groups and peer-to-peer support programs online.



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