Living with Crohn’s disease is incredibly isolating. Diarrhea, fatigue, vomiting, and colonoscopy preps are not hot topics to discuss. Not to mention, the more emotional aspects of it can be devastating. I can’t count the number of times I’ve had to cancel plans last-minute, the lack of inclusion at gatherings because I might be too sick or sad to be around, how I’ve had to endure countless jokes and comments regarding my rapid weight loss, or the dismissive responses such as, “Others have it worse.”
These comments and actions tend to come from healthy people who don’t know what it’s like to live with such a debilitating disease. Even more supportive friends and family members with the best of intentions can’t fully recognize the trauma I’ve experienced. It’s not their fault, and I wouldn’t wish Crohn’s disease on anyone. However, there are times where I don’t feel like I can be my authentic self because I either shut down due to the comments, or I must pretend I’m “fine.”
Meeting people who also have inflammatory bowel disease (IBD) has been vital to my overall well-being. I started when I attended weekly support groups at a hospital. It was a nice experience, sharing some stories with other folks, but I couldn’t go regularly due to my work schedule. Nevertheless, the meetings led me to investigate local Crohn’s and colitis events, including an IBD conference that had lots of vendors.
I was interested in one vendor from the Crohn’s and Colitis Foundation’s Team Challenge, which formed teams to walk or run marathons. I joined a half-marathon in Dublin, Ireland, which was a lot of fun. Not only was the city gorgeous, but it was the first time I got to spend a considerable amount of time with people who have IBD.
A year later, I went to a weekend retreat for women with IBD. At both events, I had the opportunity to connect with others through shared experiences such as feeling misunderstood, awful hospital visits, body image issues, and loneliness. We talked to each other about things that I couldn’t convey to my friends and family. I also never had to feel guilty for slowing down or missing a gathering when I wasn’t feeling up to it since other members were doing the same thing. I could be myself and therefore made some of the strongest lifelong friendships with these folks.
Meeting people in person has been a life-changing experience, but I won’t ignore the powers of social media. I began sharing about my Crohn’s disease experience on Instagram. My purpose was to talk about what it’s like to live with a debilitating disease as an Arab Muslim.
People from all sorts of backgrounds and cultures have reached out to me with similar things they have faced, like refusing food at gatherings (which is considered disrespectful), the inability to observe certain religious or cultural practices, and the stigma of being considered disabled. I’ve joined groups, written blogs, and participated in podcasts and social media lives to bring awareness to these issues. Of course, we also talk about things outside of our health issues, so I have joined regular video chats just for fun.
For people living with any autoimmune disease, we have support and resources at our fingertips. Even for introverts like me, the best thing we can do for ourselves is to connect with people who know what it’s like. I can say with confidence that the autoimmune community is tight-knit and welcoming, and we would love for you to be a part of it.
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