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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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