If you’ve recently been diagnosed with Crohn’s disease, a type of inflammatory bowel disease (IBD), you might be feeling overwhelmed. Maybe the diagnosis came as a complete surprise—or maybe you had a gut feeling (literally) about it and are continuing to deal with symptoms like abdominal pain, fatigue, and the urgent need to run to the bathroom. Either way, plenty of others are in your position: About 3 million Americans have some form of IBD, according to the Crohn’s and Colitis Foundation.
While you’re figuring out a treatment plan, facing the unknowns about how Crohn’s can affect your day-to-day can be intimidating—like, what are the first steps to navigating life with the condition? To find out, we asked seven people with Crohn’s disease to share advice, insight, and guidance for those who just received a new diagnosis.
1. Ask for help from those around you.
It’s common to feel uneasy about asking for help, especially if you’re not used to it. If that’s how you’re feeling, it might be because the notion of being vulnerable with others makes you feel anxious. Or maybe you just find it awkward to talk about poop and the related bodily functions affected by Crohn’s. However, learning how to ask for help is crucial for not only accepting your diagnosis, but managing it too. After all, support is available in many forms.
The first step? Talk to friends and family about your condition, especially when you’re not feeling well. “Obviously, everyone has a different comfort level when it comes to sharing this stuff. However, I’ve found people are more accepting and understanding when [I’m] more honest about what I’m dealing with,” Heather Cobb, a grade school teacher with Crohn’s disease, tells SELF.
Makeda Armorer-Wade, the author of Crohn’s Interrupted: Living Life Triumphantly, tells SELF that allowing help from others positively affects her experience with Crohn’s disease: For instance, she established connections with two coworkers who were eager to lend a hand. “Occasionally, they would pick up my medicine,” Armorer-Wade recalls. And when she experienced a flare-up at work, they were happy to bring her supplies from her car, allowing her to stay close to the bathroom. These interactions not only allowed Armorer-Wade to function better at work, but also helped her with the emotional support she needed to get through her day.
2. Seek a therapist for professional guidance.
After receiving your diagnosis, you may (understandably!) be feeling a whirlwind of uncomfortable emotions, like grief, shock, and anxiety. That’s where care from a licensed therapist or counselor can make all the difference.
“A chronic illness like Crohn’s disease impacts every aspect of your life, including your mental health,” Gaylyn Henderson, founder of the advocacy organization Gutless and Glamorous, tells SELF. You might feel like you don’t have anyone to talk to, or maybe you’re embarrassed to discuss what you’re going through, Henderson says. This can be isolating, which is why she recommends speaking to a therapist (bonus points if they specialize in chronic illness) who can teach you how to understand and process your feelings.
3. Find a health care team you work well with.
As there’s no cure for Crohn’s disease yet, you’ll need to frequently work with a medical team to stay on top of treatment—so it’s critical to find one that it’s in for the long haul, Katie (Gokhshteyn) Riggio, a new mom and technical writer who has Crohn’s disease, tells SELF. “Take your time to find doctors who specialize in IBD and are easily accessible. Most importantly, look for doctors who you can trust [and] feel comfortable with,” she advises.
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