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Sometimes I Wonder Who I Am Without My Illness

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I developed chronic conditions in adolescence, a crucial period in identity development. Turbulent to begin with, my being sick didn’t help in trying to navigate the search for who I was. My illness became my identity.

For the past six and a half years, my life has largely revolved around my symptoms. They dictated how many classes I could take and hours I could work, narrowed my social opportunities, and generally limited my activities to what I could tolerate. Day by day, hour by hour, my plans shaped themselves around my symptoms. I was passive, playing second fiddle to my illness.

In the past year, my symptoms have abated to a point at which I can pretty much function through them. I can make it through the work day with migraines, fatigue, brain fog, pain, etc. I’ve learned to accept, manage and work around my limitations. I’m still sick, but I’m grounded, functioning and hopeful.

One thought persistently nags at the back of my mind, though: Who am I without my illness? My identity as a young woman, my personal goals and professional aspirations have all been built on the  scaffold of chronic illness. I was the “very sick girl.” Now I’m the “functioning but sick girl,” and someday I might be the “former sick girl.”

On some level, I am terrified of letting go of that identity. What would remain? I am torn between the need, on one hand, to pretend to the world and myself that I am healthy and capable, and on the other hand, to justify to myself and others that I really am sick, unlike other employees. I feel conflicted about accepting credit for my accomplishments because of the incredible amount of help and support I’ve received along the way. I simultaneously crave to be normal and special, to blend in and hide, and to stand out. I want my illness to be acknowledged, but don’t want to be judged for it. I’m terrified of being sick, but afraid of being too healthy.

Who am I without my illness?

I’ve had to make peace with the fact that I will never know the answer. I’ve had to accept that my identity is irrevocably intertwined with my chronic illness. I’ve had to mourn the life I could have had and learn to appreciate the unique opportunities afforded by my experience. My illness shaped my career aspirations, endowing me with an empathetic passion for helping children and families cope with chronic medical conditions. It gave me perspective and determination.

I am not my illness, but I am me because of it.

the author smiling

Originally published: June 17, 2019
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