Crohn’s is a disease that may affect almost every relationship in your life, including with family, friends, intimate partners, and co-workers. Here are some tips on how to maintain those connections and get the support you need.
Family and Friends
They may be your closest relationships. They also may feel the closest impact of the ups and downs of your Crohn’s disease.
Open up. One way to keep your relationships strong is by talking honestly to your loved ones. You can share as much as you’re comfortable with. Be candid about your needs and what is and isn’t helpful. Let them know about comments that hurt your feelings. Write down specific points you want to cover to help you remember.
You might need to have this talk many times as your condition changes. Aside from practical conversations, it’s also important to share your feelings. Worried about being a burden because a loved one is your caregiver? Talk about it. Open up about your fears. Just talking to a friend about what’s going on can bring you closer together.
Listen. Invite your friends and family to tell you what they can and can’t do for you. Then everyone has clear expectations and the chance to set their own boundaries. You also can ask if what you’ve said and done in the past have helped them.
Widen your focus. It’s easy for your interactions with family and friends to center on your Crohn’s disease. Making sure the relationship isn’t all about you will keep it strong. Talk about subjects you all enjoy. Keep up with what’s happening in their lives. If a flare kept you from accepting an invitation, ask how it went. When you’re feeling up to it, do activities together to make up for the missed fun. Remember that Crohn’s is only one part of your identity.
Think of others. Pain, embarrassing symptoms, and stress from your Crohn’s disease sometimes may leave you frustrated. In those moments, it’s good to remember to be kind to those around you no matter how bad you feel. Your family and friends will thank you for it.
Demonstrating care is a two-way street that strengthens your relationship. If you have a partner or a caregiver, remind them to rest and make time for themselves. Watch for signs that they are taking on too much. Maybe someone else can step in to offer a break.
Accept limits. It’s understandable to need and want support and acceptance from people close to you. But it may be hard for some people to understand everything you’re going through. Joining a support group can give you a chance to connect with others who can relate to your experience.
Crohn’s disease can pose challenges to your sex life. A candid talk with your partner about your worries and thoughts can be the first step to fulfilling intimacy. The two of you can make adjustments based on those conversations. For example, you can try out positions that work best if you have belly pain. You may feel better and more in control if you are on top.
If you worry about incontinence during sex, try going to the bathroom beforehand to help ease your mind. Or have sex when your bowel isn’t as active. You can also ask your doctor if it’s safe for you to take anti-diarrhea medicine and for advice on handling incontinence. If you have an ostomy bag, you’re less likely to have an accident if it’s empty. Lubricant can make intercourse comfortable if you have a fistula, abscess, or scarring on the skin near your vagina.
You don’t have to tell your employer about your disease if it doesn’t affect your job. But if it does, let your boss or the human resources department know. You may want to tell your co-workers, too, especially if your disease may affect their jobs. People who understand what you’re going through may be more likely to support you.
Be proactive. Alert your employer if your Crohn’s disease may keep you home from work or if you need special help to manage your duties. The Americans with Disabilities Act covers Crohn’s disease. That means your company legally must provide reasonable accommodations. For example, you may need a desk or workstation closer to the bathroom. Or a more flexible work schedule if you have flares. The federal Family and Medical Leave Act lets you apply for up to 12 weeks of unpaid leave for an ongoing medical condition.
Prepare for emergencies. Have extra medicine, clothes, ostomy supplies (if needed), and food ready to go. Think about your needs if you must travel. You can use your own car or rent one so you can make as many stops as you need. You could request an aisle seat close to the bathrooms on a plane.