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Life With Addison's Disease Turned Me Into 'the Girl in the Box'

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There is a girl who lives in a box somewhere safe inside of me. When she was younger, that little girl’s daddy called her “Alice.” The girl in the box loved butterflies, baseball, and boat rides. Her dogs’ names were Scott, Champagne, and Mindy. She liked to skip and run. She hated spinach. She loved licorice and green Kool-Aid. She loved swimming, playing with her cousins, and watching her grandparents play the guitar.

No one knows there is a girl trapped in a box inside of me. No one knows that little girl trapped in a box inside of me is the real me. No one is trying to rescue me because they can’t see that little girl. I put myself in that box as chronic illness slowly eroded my soul. I put the little girl I was in a box to protect and comfort me as my reality was overtaken by the daily struggles of Addison’s disease.

Sometimes that little girl in the box cries out, “I am still here. I am inside this box. Please don’t forget me or give up on me. I want out of my box.” She begs and pleads, ”Please, please, please! Someone help rescue me!”

I hear the real me from inside that box. The real me is terrified, and she cries all alone. I remember the girl I used to be — the girl the world has forgotten about — but I have not forgotten about myself. I still exist inside that box, and I made a promise to not give up on myself.

But chronic illness has made me fearful and too tired to fight. But I made a promise to myself that the little girl in a box would be worth the effort. She is worth the fight. The little girl wants out of that box — but I do not know how to rescue her.

Then, I looked into my children’s eyes. I thought, “When I die, is this how I want to be remembered — as a shell of who I really am?” My children do not know the girl in the box — they do not know the real me. My children — my shining lights — deserve the real me. In that moment, I realized I deserved the real me. I realized I needed to find a way to rescue me.

To get out of my box, I needed to strengthen a soul that was deprived emotionally, mentally, and spiritually. I started putting together my own resources, exploring a multitude of health care options, and using unconventional means of healing — challenging the system that had forgotten about the girl in the box.

That terrified little girl who was locked inside that box held herself tightly and gave herself permission for her light to grow brighter than bright. With time and patience, she rescued herself from inside that box.

I am no longer “the girl trapped in the box.” My journey with chronic illness has been an immeasurable gift. I did not let my pain define and destroy me. Instead, I chose to acknowledge, embrace, and accept my journey. I took personal responsibility for my choices. I discovered how to love myself deeply, and I found my true courage and strength.

In the darkness, I found my light. Now I make a promise to that little girl who was forgotten and locked in a box. I promise that until my last breath, she and I are worthy of our lights shining brighter than bright.

This story is an adaption of an essay featured in “Transforming Pain Into Purpose.”
Getty image by Westend61.

Originally published: June 22, 2022
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