The Part of Mitochondrial Disease That's Hard for Me to Talk About

My husband and I on a couch
My husband and me.

So here’s the thing, since I first started showing symptoms of mitochondrial disease over six years ago, many things have changed. My life has involved way more doctors, and I’ve been learning to pace myself so that I live productively with my greatly decreased energy level. Those are both things most people know about me.

What most people do not know is, as vane as it sounds, the hardest part of my journey has been dealing with the changes to my body.

My body is under constant attack. I have had a brain tumor removed that has resulted in a bald spot on my head, around five abdominal surgeries that have each left their own unique marking on my stomach, a muscle biopsy that left a large scar on my leg, and have been on weight gain-causing medication since my illness began, resulting in 100 pounds more of me. At times, I feel like a life-sized operation game.

After all these changes and scars, I struggle to recognize my body as my own. I remember what I looked like before I was sick and wonder when I started looking so different. I struggle, especially in the summer, with the confidence to get dressed in a situation-appropriate manner and head out in public. I often resort to long sleeves and pants, even if I’ll be the only one all covered up. In my mind, it is easier to stick out because of outfit choices than because of my scarred body.

Just because I lack confidence in this body does not mean I am ashamed in any way of what I have been through. I am proud of all I have overcome. I have heard on several
occasions that I just wouldn’t make it through the challenges my illness has presented, yet here I am.

I just cannot yet show these things to the world. I am still learning not to harshly judge my own body.

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