When I think about inflammatory bowel disease (IBD) and my quality of life, I think about more than just being symptom-free. I also about think about striving socially and personally. People with IBD consistently say it has led to some kind of obstacle to their dreams and goals. I strongly share this sentiment. Having a chronic illness has certainly affected me academically and professionally.
Because of this disease, I’ve come across people and experiences I would have never encountered otherwise. In the past decade or so of my adult life, I’ve had experiences that gave me new insight on how people with a chronic illness really try to achieve some semblance of normalcy. They try to fit in, like a slightly less exaggerated form of the movie Mean Girls.
I think about all the moments and days when I’ve had to really play the role of a healthy person. It was daunting, nerve-wrecking, and exhausting. I would come home with my energy completely drained and worry for the rest of the night about how I could do this again tomorrow. Interestingly, this was when I worked for a residential treatment facility for teens with mental health issues. The situation was quite ironic. Staffers were chastised for taking sick days and PTO days were difficult to get approved by management.
So, why did I continue to work in an environment that was so toxic to my health? Honestly, I did it for the patients. As someone who knows the difficulty of being a patient, I imagined myself as those people who were let down so many times already in their young lives. And that’s why I continued to stay. It’s why I continued to show up every day for 2 years. They were worth the worrying I did every night thinking about the fragility of my own health. Thinking about, “What will tomorrow look like?”
I’ve gotten better at that now and ultimately what changed was working in a more supportive environment. Someone might ask, and rightfully so, “Nour, why didn’t you put your health first?” I don’t think I would’ve been able to give a clear answer. When you’re younger, you think your body can recover quickly (not always true, unfortunately). I also wanted to prove to myself that I could do everything my peers could do. They could hold two jobs and just sleep 5 hours? So could I! No problem.
Actually, it was a big problem. It was very destructive thinking. There is no crash course on how your life changes when you’re diagnosed with a chronic illness (There’s no “Chronic Illness for Dummies” book). Everything in your life stays the same, but you as a person change, physically and mentally. And wow, that is so hard.
I applaud academic institutions and businesses that are learning how to accommodate people with chronic illnesses and helping them accept and grow into who they are and what they can still become. I can attest to the fact that people with a chronic illness still want to hold onto remnants of their former selves when they were healthy. And it’s not easy for us to acknowledge when we need help or need a break.
I’m so fortunate and blessed to currently work in an environment where I’m no longer afraid about sharing my medical history. I don’t have to worry about being belittled if I feel under the weather. It almost feels like a surreal experience. When it’s clear I’m not doing well, everyone is incredibly supportive.
The self-guilt will always be there. I’m speaking as a Type A, perfectionist, need-to-do-everything-right personality. But when my body says time-out, I need to respect that. In previous posts, I’ve discussed how fatigue has been one of my greatest challenge with IBD.
Most days, my lunch break is not really lunch. I take a nap in my car. My body needs that 30 minutes to recharge. And it has taken some time not to feel embarrassed about it. I’m not a character in a movie who can do 100 things in a day and wake-up rosy-cheeked and refreshed after only 4 hours of sleep. As a real person, with a real story, work-life with a chronic illness is not easy. But there are employers and colleagues who care and want you to be true to yourself, perhaps more than what you have allowed yourself to feel.
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