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What I Wish People Knew About Living With Crohn’s Disease

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Basmah Ali - Blogs
By Basmah AliOctober 13, 2021

Search Crohn’s disease on the internet, and you’ll find tons of medical information. This is wonderful, especially since it wasn’t available when I was diagnosed 18 years ago. However, one topic you may not see is what it’s like living with Crohn’s disease. Although this is not an extensive list, here’s my take.

  1. It’s not just a pooping disease, and it’s more complex than the stomach flu. Some people with good but misguided intentions try to empathize by talking about a time they got sick or had food poisoning. As horrible as those situations are, there’s no comparison. It’s a lifelong disease that for me includes fatigue, fragile bones, mouth sores, brittle hair, brain fog, insomnia, and mental health problems -- which leads to my next point.
  2. It impacts my mental health. I don’t recall the state of my mental health pre-Crohn’s, but depression and anxiety have been an ongoing battle since. In addition, all my times inside a hospital and clinic -- the poking and prodding, what felt like invasiveness from medical staff, and my body’s betrayal -- have left me traumatized. It’s been a few years since my last hospital visit, but occasionally the smells and sounds of it hit me like it was yesterday. Therapy is unusual in the Arab community, but I have seen someone off and on since college. It has helped me immensely, and my only wish is that I could have started talking to someone as soon as I was diagnosed. It would have helped with processing what was happening and probably saved me from a lot of tough situations. I highly recommend anyone living with IBD to seek therapy.
  3. I wish I could eat your food, Tante (Auntie)! I know how delicious everything is, but I will be sick for days if I eat it. For all my friends and family who offer me food, please don’t take it personally if I refuse.
  4. Just because I’m currently in remission doesn’t mean I can live like an able-bodied person. I still struggle with my lack of appetite, forcing myself to eat to maintain a healthy weight. I still monitor how much energy I have for the day and how it should be expended, knowing I will be wiped out for the next few days.  It will likely be this way for the rest of my life.
  5. Even though I’ve never had surgery due to Crohn’s, my experience still matters. I’m not discounting the journeys of people who have had surgeries or ostomies, nor is this a “woe is me” situation. But I went through years of keeping my struggles and emotions to myself because I would hear, “At least you don’t have it as bad as so-and-so.” Or I would be questioned about why I never had surgery. I’ve developed these intense feelings of guilt and shame, thinking who am I to complain when I’ve been relatively lucky. It’s an isolating mentality, and I thought on several occasions that I have nothing to offer to the public. It took a couple of chats with a friend, and more recently my therapist, who validated that my story and feelings are important. Deep down, I know that there are others who are also struggling in silence without the need of surgery. I want to let them know that they don’t have to.
  6. I’m still living my best life. Crohn’s disease comes with challenges that I wouldn’t wish on my worst enemy.  Yet I am blessed in many ways. I have a supportive family who I love very much, especially my fun nephews and nieces. I also continue to meet the most incredible people through IBD-related organizations. I find time to do things I enjoy, like traveling and playing guitar (terribly). I’m content with how things turned out despite everything.

 

 

Photo Credit: Jon Vallejo / Moment via Getty Images

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About the Author
Basmah Ali

Basmah Ali has been living with Crohn's disease for 18 years. She is working toward becoming a certified wellness coach and loves sharing food and lifestyle tips on Instagram. Ali is a part of Girls With Guts, an organization addressing obstacles women of color encounter while living with inflammatory bowel disease. She enjoys traveling, weightlifting, reading, and playing with her nephews and nieces. Connect with her on Instagram and Twitter.

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