I was 16 years old when I was diagnosed with Crohn’s disease. At the time, I had no idea how much it would impact every aspect of my life. I was supposed to be hanging out with my friends, thinking about college, and figuring out what kind of person I wanted to be. I wasn’t supposed to be lying in bed, depressed and isolated from the world. Crohn’s disease wasn’t well-known at the time, and social media was in its infant years. So for the longest time, I didn’t have anyone who understood what I was experiencing. I felt so lost and alone.
I’m Egyptian, and in the Arab culture, it is expected that we excel in academics and our careers. It is also unusual to get professional help such as therapy or disability services. For years, I tried so hard to push through. My grades in undergrad were suffering, my thick curly hair was chopped off because I wasn’t taking care of it. I barely spent my free time doing anything fun. I couldn’t even remember what I enjoyed at that point. I did seek therapy after my family saw me struggling, but I hardly ever talked about Crohn’s disease. I felt like I needed to put all my focus into school. So, my health was put on the back burner. In my mind, if I ignored Crohn’s, it didn’t exist. I kept that mentality for years, and it’s caused me to flare up several times.
I didn’t realize that how I was living was killing me until I was fired from a case manager position after being hospitalized. I remember having these weird mixed feelings of failure and disappointment in front of my family, while I was simultaneously relieved. It was as if I took my first real breath in a long time. I decided, at that moment, I needed to accept this disease if I wanted to heal. I’m Muslim, and there’s this concept called tawakkul, or “trust in Allah.” I was angry and my faith was shaky for the first 12 years I was sick, but I decided to put this concept to good use. The catch is that I couldn’t blindly rely on Allah; I had to do my part as well. I started treating my body the way it deserved by taking my medications regularly, finding the right diet and exercise regime, prayer, therapy, and seeking the support from other people with IBD. Slowly but surely, my health improved significantly.
That’s not to say I still don’t have work to do. I’m still working through trauma that will likely take a long time to heal from. I wish I came to terms with my Crohn’s disease from the beginning, but now I use my experience to inform and encourage others to do right for themselves. Living with a condition like Crohn’s can be emotionally debilitating, but it doesn’t have to ruin lives. With acceptance and a good support system, it is possible to live a fulfilling, happy life.
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