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How I'm Taking Back Control After Receiving a Rare Disease Diagnosis

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I was sitting next to my husband in a sterile hospital room. I was so nervous; pools of sweat had already gathered beneath my arms. The genetic counselor, across the table from us, removed a piece of paper from the white envelope in her hand. She knew we were anxious to hear the results, so she got right to the point. “You have tested positive for the gene that cause Huntington’s disease” she said.

I didn’t say anything right away. I just nodded and glanced quickly at my husband. I didn’t want to cry because I knew once I started, I wouldn’t be able to stop. Inside my head I said, CRAP! That’s what I thought, and I just sat there. In those moments I knew that my life would never be the same. It would be spent living in limbo waiting for the day when Huntington’s disease started to affect my body and my brain. What is the point of living if I’m just going to become a burden to everyone who loves me? I thought to myself.

Huntington’s disease (HD) is a neurological condition that slowly kills nerve cells in the brain, causing cognitive impairment, uncontrolled movements and emotional issues. Being diagnosed as gene positive for HD means I have the genetic mutation that causes the disease. I will get HD one day; I just don’t know when the symptoms will start.

In the months following my diagnosis I fell into a deep depression and struggled to move on with my life. I couldn’t imagine ever feeling better again. No matter where I went, I was constantly being bombarded by images, people and things that reminded me I was going to get HD. Like an old man on the street with shaky hands that I observed at thoughtful distance, or a random twitch of my foot leaving me to wonder if that was how it all started.  Still in shock I’d repeat the same phrase over and over again in my mind, I am going to get HD, I am going to get HD. I couldn’t believe what was happening to me. I felt like I had lost all control of my life including my future.

Even though it seemed like an impossibility, I began asking myself an important question, how am I ever going to be happy again? There were many places I turned to in my search for answers. I read books about people struggling through hardships and listened to documentaries on the radio. I talked to my closest friends and started going to group therapy. In each place I looked I learned a little something and tried to apply it to my life. Through sheer determination I forced myself to examine what I was afraid of. This included my thoughts and feelings around having children now that they were at risk of inheriting the gene from me. Was it morally correct to have a child now? I asked myself.

One emotionally pain filled day after the next I started inching my way back towards the happiness I remembered existing in my life. My husband and I even started planning for our futures again. The one thing we decided was settling down and having the family we had always dreamed would make us happy. There were many things we were still struggling to come to terms with, but we were taking back control of that part of our lives.

Has a medical diagnosis left you feeling like you have lost control of your life? What did you do to regain some control of your future?

Getty image by Olga Strelnikova

Originally published: August 26, 2021
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