Genetic testing's emotional impact

"Finding out I was gene-positive had hit me harder than I could ever have imagined. How was I to know that my decision to get tested would have such an impact on my life? All of the rehearsing I had done in the weeks leading up to my results appointment proved useless. At the genetics clinic that day, the doctor told me most people feel better after about three months. As I sat on the hard plastic hospital chair, staring at the creased piece of paper containing my test results, I thought, That doesn’t seem so bad. Three months isn’t that long.

The problem was it had been longer than that and I still didn’t feel better, not even a little bit. I was starting to think something was wrong with me, that I was the cause of my own misery. Am I wallowing in my own self-pity? Do I like feeling this way? I didn’t understand why I couldn’t make myself better. I had never experienced a depression as deep or as long-lasting as this. I had recently begun to realize that anything I had felt previous to my HD diagnosis that I thought was depression was just sadness.

Every day, every moment, was a struggle. There was no more joy in my life. I hadn’t smiled in weeks. I had more unanswerable questions now than before I got tested. How am I supposed to live with this? I can’t stop it from happening, so how am I ever going to feel OK?"

Erin Paterson is a writer and the author of All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.

She shares her story and discusses her KevinMD article, "The emotional side of genetic testing." (https://www.kevinmd.com/blog/2021/10/the-emotional-side-of-genetic-testing.html)