When You're Not Sure Who You Are Because of Your Chronic Illness


Sure, I know who I am. I know where I live, that I have a degree in speech-language pathology and that I am a mother of two young boys. I realize I’m not a morning person and that I live for relaxing snow days. I also know that my favorite foods are peanut butter and chocolate; either separate or combined into one mound of deliciousness called a Reese’s. But do I truly know who I am deep down inside? Or has this monster I call chronic illness faded my being into what feels like a lifeless personality with no layers?

I used to play piano and violin when I was a child. Sure, I didn’t always practice and had days where I wanted to quit. But deep down inside, it was part of my being. I could sit down at the piano and play a tune as I heard it in my head. I can still physically push the keys, but the pedal doesn’t get much attention anymore; my legs weaken with a vengeance if I try to hold the pedal down for even one song. And once you’re used to the beautiful effects of the pedal, piano isn’t the same without it. And the violin? Try holding up five heavy bricks with one arm and a pile of concrete with the other; that’s what it’s like holding a violin and bow in the proper position for five minutes.

I used to enjoy taking scenic walks and hikes through the woods. To be fair, I was never one to camp out overnight, but to breathe in the fresh air and be surrounded by limitless, natural beauty provides a feeling no words can do justice. My legs won’t take me on these journeys anymore, at least not now.

I know who I used to be; a young woman of adventure and musical talent. I could name 20 more ways in which my illness has taken my being away from me, but I lose a piece of my soul with each recollection. I mourn the loss of who I was each and every day. My being has morphed into a chronically ill version of myself, one that I don’t always recognize or know. And as I walk this journey, I spend a little time each day getting to know myself while trying to pull bits and pieces of my old self from the past.

We don’t always get to decide who we become; for some of us, that is chosen for us. But we do have a choice of whether or not we like the person we see when we look in the mirror each morning. While I may not be able to play piano for hours or go on hikes through the national parks, I see a young woman who is caring, determined, and satisfied with who she is in the moment. My illness may impact who I become, but it is just one of the many layers that make me the person I am. And you know what? This terrible, life-altering illness has changed who I am. It has made me more appreciative, more determined, and more empathetic to the world around me.

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

woman sitting at table alone

6 Terminology Differences That Matter When It Comes to Chronic Illness

When talking with someone coping with chronic illness, you might find yourself trying to relate to their experiences. You’re probably coming from a kind and caring place and looking to sympathize, but you may not realize that when you say things like “Oh I know just how you feel! I was so exhausted after work [...]
Top view close up female hands typing on laptop on wooden table in cafe with cup of coffee and books with text 18 things people with chronic illness want to post on facebook but dont

18 Things People With Chronic Illness Want to Post on Facebook, but Don't

While many Facebook users dash off a status update about their latest vacation or check in at a restaurant without a second thought, people who live with chronic illnesses may be hesitant to share a post about what’s going on in their lives. As Mighty contributor Jennifer Steidl beautifully explained, for many chronically ill people, there’s [...]
Chocolate cupcake with a sparkler

My Illness Doesn't Take a Holiday

I recently celebrated my 20th birthday. The week before, I was extremely excited, and couldn’t wait for the day to arrive. The morning of my day of birth, I woke up with sharp stomach pain, stiff joints, and throbbing pain in my back. When speaking with my mother on the phone that day, she apologized for the fact that I did [...]
Young woman using cellphone outdoors.

The Energy Metaphor I Find Easier to Explain Than the Spoon Theory

Quite recently, and for the first time, I got to explain the “spoon theory” to someone. It was oddly funny to me. After all, the circles I now frequent in my little online universe are filled with references to “spoonies,” spoon crafts, spoon jewelry, spoon tattoos… Actually, it turns out the story of the spoons [...]