I’ve always been a type A personality, perfectionist to a T, and I put my heart in everything I do. I take pride in everything I do, even if it’s considered a menial task. My only kryptonite is time.
I delved into anything that caught my attention -- whether it was school, research, volunteering, writing, or holding more than one job. My motto was “life is too short” and I wanted to do it all. Experience it all. I was raised with the mentality that tomorrow was never guaranteed and to seize every opportunity granted to me. My identity was linked to my hard work. That was the reflection of who I am. I was always “Nour that did it all.”
Perhaps it was “immigrant guilt.” Perhaps it was the pressure of being an older sibling. I’m not sure what it was exactly, but I felt that I had a lot to prove. To myself, to my parents, and to all of my family back home. They had lived and suffered through war and famine, and I felt that I needed to prove, to show -- in everything I do -- that their sacrifice wasn’t in vain.
My Diagnosis Shook Things Up
My conscience was always whispering to me, prodding me, guiding me. “There’s nothing you can’t do Nour, keep going.” In 2011, when I was diagnosed with ulcerative colitis (UC) however, many of my ambitions and passions came to an abrupt pause.
How I experienced it felt more than abrupt. It felt like an earthquake that left everything in shambles. Many things were no longer in the place where they belonged, and I had to figure out how to put them together where they made more sense. Who was I now? Was I the same Nour?
In the beginning, I was determined not to let my diagnosis affect my life in any way. I was going to continue everything that I was doing and, well, keep going.
I’ve never met anyone with ulcerative colitis, and I was the first in my family to receive a UC diagnosis. I was living in my happy, ignorant bliss and didn’t make active efforts to ask or learn about the long-term effects of either the disease or the medications I was taking. In my mind, this was all temporary. A slight bump in the road, that’s all.
This isn’t something I wanted as part of my identity. It wasn’t something I could put on my resume or talk about with pride in an interview. It was a blemish, an insult to my hard work. If anything, I was angry, upset. How dare my body go against me like this? I have done everything I can to take care of it -- eat well, exercise. Maybe I didn’t always sleep well, but I got more sleep than the rest of my peers.
I spent many nights in tears. A previous 1-hour project or assignment now took 2 or 3 days to complete. My body was unpredictable. As a planner, I didn’t enjoy this unpredictability. I was now at the mercy of my body. It made the calls when it needed to rest when it needed a break.
Time for a Change
This was a hard life lesson. And it took me a few years before I realized I needed to make serious changes to my life. Whether I liked it or not, this diagnosis was now part of my identity. And I needed to make it work with who I am. It was starting to take a toll on my mental health, and it came to a point where I no longer enjoyed anything I was doing.
I was unhappy most of the time and I felt a great disconnect between my aspirations and the activities I was involved in. They felt like chores, and I wished I could have enjoyed them like I did before.
There was no sudden epiphany or lightbulb moment. I had always known what I needed to do but refused to take the steps to do it. That would have been acknowledging that I could no longer do it all. But somewhere, at some point in this journey, I found myself reevaluating my choices.
It most likely happened after my hospitalization in 2015. As much as I wanted to deny it, this disease was now part of my life and if I wanted to live a full life, I had to be proactive in making good choices. I need to accept it. I forced myself to pick two or three activities to fully commit myself to. And as it turned out, it wasn’t the worst thing to happen to me. It didn’t completely strip my identity away. As a matter of fact, it didn’t take away from my identity at all. It was actually liberating.
It gave me time to focus on these activities, be truly immersed in them, and challenge myself within these activities. It gave me time to focus on my health, let my body take the reins, and to finally be situated and appreciate the nuance of this new person. In the early days of my UC diagnosis, I heavily scrutinized this new body, not quite appreciating its struggles and all it was doing to keep going.
If there was one thing I learned it’s that identities are malleable. We’re constantly growing and changing as people. This disease gave me the opportunity to view my life through a different lens. Instead of the question of “Who is Nour?” it became more of “What can Nour be?”
And as long as I respect the boundaries of my body and my health, I can do anything as well as anyone who is able-bodied. A chronic illness does impose certain limitations on my body, particularly with the current challenge of ongoing fatigue, but there are no restrictions to my goals, no limitations to achievement.
As Stephen Hawking said, “Intelligence is the ability to adapt to change.” Because of this disease, I’ve been actively involved with patient advocacy. You see the world a bit different with a chronic illness. And it’s one of the ways it has shaped my identity. If I thought of it as a weakness before, now it’s one of my greatest strengths.
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