I Don’t Want to Live with a Secret Anymore

Erin Paterson avatar

by Erin Paterson |

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I made it down the long, sterile hallway and past the waiting room before bursting into tears. My husband gathered me into his arms as I stood there sobbing, unable to move. His shirt quickly became stained with my tears. We paid no attention to the dinging bell and the people exiting the hospital’s elevators behind us.

We had just left an appointment with a genetics counselor, where I had heard the worst news of my life. I had tested gene-positive for Huntington’s disease (HD), and the weight of my diagnosis was crashing down on me. That moment marked the beginning of my struggle with a deep, lasting depression. I had no idea how to move forward with my life. My gene status felt like a secret that I had to keep.

I was paranoid about how others would react to my diagnosis. I was self-employed and worried that if customers found out about my gene-positive status they would stop shopping at my store. I was terrified that my husband was going to wake up one morning and ask for a divorce. I tried not to talk to him about my fears because I didn’t want to give him another reason to leave me. I was sure my friends would end our relationship. Why would they want to be around me if I am going to become a burden?

My biggest fear was not suffering from the disease; my worry was that I would end up alone with no one to love me. I had a hard time viewing myself as anything other than a person who was going to get HD. I lost my self-esteem and developed an anxiety disorder. Throughout my secrecy and depression, I longed for someone to acknowledge my fears and validate my emotional pain.

On the few occasions when I got up the courage to speak to someone about HD, I rarely got the kind of support I was looking for. People tried to placate me by saying things like, “They might find a cure before you get it,” or, “Just try not to worry about it.” I remember sharing my secret with a running buddy one summer evening. We were headed down a long stretch of road past clipped, urban lawns, and manicured gardens. “If you think positively, you probably won’t get it,” she replied to my story, matter-of-factly.

“No, it is written in my genes, I am definitely going to get it,” I said. I explained the nature of my diagnosis while choking back my tears, determined not to cry this time.

“But you never know. You could stop it if you changed your mindset,” she said. “You just have to tell yourself you’re not going to get it.” Her response angered me, so I dropped the subject and fixed my sights on the road ahead while focusing on the sound of our feet hitting the pavement. I thought to myself, “She doesn’t get it. There is no getting away from it. Why did I even tell her?” The end of our run couldn’t come soon enough.

After several similar encounters, I stopped talking about HD, and my status became a hidden part of me. Though, the problem with living with a secret was that I began to feel isolated and ashamed.

Since I didn’t feel that I could talk freely about HD, I began writing to express my feelings. I would sit at my desk with a hot cup of tea each night after my daughter was asleep, pounding on the keyboard, furiously recording my thoughts. The more I wrote, the stronger I felt that I shouldn’t be ashamed of my gene status.

I knew that sharing my experiences could help somebody — whether they are making the tough decision to get tested, they’re a couple trying to figure out how to have kids, or friends and family members of someone with HD who are struggling to say the right thing.

I am both terrified and excited to be coming out from hiding and sharing my story with you in this column. I hope that you feel a connection with my words and find some comfort in knowing that there is someone out there who has gone through a similar experience. Most importantly, I hope that this column helps you to feel less isolated and alone.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

Leon Boyer avatar

Leon Boyer

Erin you are a very smart and intelligent lady. I am sure that you will help with you column a lot of people that live with this gene. Your article was very informative and very personal I felt your flings and emotions. Congratulations for a well written column.

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Erin Paterson avatar

Erin Paterson

Thank you so much for your kind words Leon. That is my hope and reason for writing.

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Delane Branson avatar

Delane Branson

My Husband and I dealt with a lot of comments over the years, but the one you received from your running buddy is one that I never heard before. So very sorry you had to hear that and that you didn't feel the support you so clearly deserve. Good Luck with your Column, with your family, and with your life. I wish I could do more for you and for all people dealing with HD.

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Erin Paterson avatar

Erin Paterson

Hi Delane, Thank you for your message. Just knowing you understand goes a long way to supporting me and others with HD.

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Jenn avatar

Jenn

This hits home for me and I completely get it. My mother is HD positive and I’ve watched her deteriorate over the last 8 years. I have swung back and forth about getting tested or not for almost 10 years. My husband and I actually had a doctors appointment this morning to try and start the process of having children. It’s all so much. I knew it would be which is why I’ve pushed it off this long (I’m 31 this year). I understand what you’re feeling and what you’re going through. You’re not alone. And your frustrations are completely valid when people brush it off or don’t understand. Thank you for writing this. I wish nothing but the best for you and your family.

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Erin Paterson avatar

Erin Paterson

Hi Jenn, Thank you for sharing. Making the decision to have children is a very difficult one. I hope that you are finding the support you need at this time. There are so many more options available now. Only you and your partner can make the decision that is the right one for you. I spoke at a conference last fall about family planning and collaborated on this family planning fact sheet. https://www.huntingtonsociety.ca/wp-content/uploads/2019/03/Family-Planning-Fact-Sheet.pdf
Wishing you the best of luck! Erin

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Jenn avatar

Jenn

Wow thank you so much! This breaks it down so much easier than searching online and getting answers from several different sources. Thanks again!

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Erin Paterson avatar

Erin Paterson

Hi Jenn, I am glad you found it helpful! Thinking of you
Erin

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Erin Paterson avatar

Erin Paterson

Glad you found it helpful!

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Erin Meadows avatar

Erin Meadows

As a fellow Erin who was diagnosed and cried in a hallway after finding out, and is also self-employed I feel for you. So, thank you for sharing your experience. From my own experience, you can share your burden with others and they can handle it. And yes I have received a many "there will be a cure", or "change your mindset" moments, but I have also shared some really great moments of solidarity and relief in letting it out there. So keep on sharing it will absolutely make a difference in your life and others who read about it!

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Erin Paterson avatar

Erin Paterson

Hi Erin,
I am sorry that HD has touched your life. Thank you for your support. It is exhausting to tell people but I definitely feel better not hiding it anymore. Erin :)

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Vindhya Amarasinghe avatar

Vindhya Amarasinghe

I came across this article through Canada Writes group, and my heart goes out to you. I've had a colleague who was gene-positive and I know the terrible burden he and his wife had to carry. While I understand nothing I say may ease your burden, if I may can I suggest that you read on Theravada Buddhist teachings. It may help you to detach yourself from the disease, and separate yourself from your physical body which is just a sac that we all occupy.

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Erin Paterson avatar

Erin Paterson

Thank you so much for your message. I appreciate your understanding and support. I look to many places to gather my strength and will definitely read up on the teachings you suggest.

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