I had permanent black bags under my eyes from not sleeping properly. I never woke up feeling rested. I hit the snooze button three or four times every morning, prolonging the start of each day. One morning, four months after receiving my test results, I swung my legs out of bed and sat on the edge, trying to motivate myself to get moving, staring at my wrecked face in the mirror on the sliding closet door. How can my husband love this horrible face? I was a quivering, inconsolable shell of a person. I looked over at the scrunched-up socks that had been lying on the floor for the past few days. I didn’t have the motivation or the energy to pick them up. Living felt like too much effort.
I was in such a gut-wrenching state of despair that I was simultaneously afraid to leave the house and to be alone in it with only my tortured thoughts for company. I no longer enjoyed the solitude of puttering around an empty house, cooking meals, tidying up, or reading a book. The silence only amplified the fact that there was no more peace in my mind, only a constant internal chatter. I couldn’t stop ruminating about the results appointment. The voice of the therapist repeating over and over again, You have tested positive for the gene that causes Huntington’s disease. I was still in shock. My mind was spiralling out of control towards another heaving, sobbing breakdown and I had only just woken up. I flopped back down onto the bed, curled up into the fetal position, and started weeping, again.
I felt like I was at the bottom of a deep, dark pit. All I could see was a tiny pinhole of light, the last of my hope. I kept trying to claw my way out, grasping onto the dirt and roots, but no matter what I did I fell back in.
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 okay?
Erin Paterson is an author, public speaker and Huntington's Disease Advocate. Find
out more at erinpaterson.com