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Learning to Love and Care for Myself With Hidradenitis Suppurativa

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I am a warrior, yet I am a slave. A slave to my body, a warrior of an almost invisible illness.

My illness is not me, it’s not my identity, but it affects me so severely in daily life that it actually changes the ways in which I choose to live (or how I feel like I can live more comfortably).

There is a lot of guilt that comes along with having to make choices that keep me from living the so-called healthy and productive life. I have to call into work, I have a lot of doctor appointments and, because of that, I have a lot of debt.

I have some physical restrictions. They seem to change every day. Sometimes moment to moment. My body fights against itself constantly. And I wonder why it’s hard for me to find peace.

When you have a disease that has no cure, life can seem hopeless. You find yourself doing your own medical research and trying to find the key that opens some magical door no one knew was there. You are constantly questioning every move you make and wondering what choices you’ve made in the past or present could be making you sick .

It’s got to be something I’ve done.

This can’t be just something happening to me.

I went wrong somewhere.


There are many thousands of people who have my disease. Although rare, I have found the occurrence of it is global.

I’ve joined online support groups with people from all over the world. All with their own stories, experiences and lifestyles. There seems to be no rhyme or reason for why this happens to people. Doctors are guessing and research goes undone because there is not enough push or attention put on it.

My illness is socially awkward. It’s something no one really wants to talk about. It seems to make people uncomfortable. It is unpleasant, and many people’s stomachs might churn at the sight of it.

Yet I try to find a way to still love myself .

Yet I still try to find ways to heal myself from an invisible, unknown, incurable disease.

Maybe these words that I am sharing right now are the beginning of the most healing treatment prescribed to me, as of yet.

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Thinkstock photo via Cofeee.

Originally published: May 23, 2017
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