Going Public with My Tremor Lifted a Heavy Burden from Me

By Chloe Hodge

Tremor has always been a constant in my life. Just as certain as my name or age, my tremor was something that was part of my identity. Of course, when I was younger, I didn’t understand the complexities behind it. I didn’t understand that I had a medical condition, I just thought I was more nervous than my classmates. I tried to keep it under the radar as much as possible, and would actively avoid any possible reason for me to be in the spotlight. This wasn’t a good mindset for a child to be in as I started to isolate myself both internally and externally from my peers. Although I did have friends, there was always something in the back of my mind that told me I was different.

It wasn’t until I got to secondary school that I realized it was more than nerves. It was at this point that I saw a doctor who in turn referred me to a neurologist. Then at the age of 13 I was diagnosed with essential tremor (ET). Suddenly things started to make sense and I began to see my tremor with more clarity. As I did more research, I realized I wasn’t alone in this. Thousands of people around the world had the same condition, all of them sharing the same experiences as me. In fact, it was reading people’s stories on the International Essential Tremor Foundation website that first allowed me to see ET from another perspective. Their stories and experiences were so familiar to me that I felt as though I had written them myself. I cannot put into words how monumental it was to first read the story of someone else with the same condition as me. Even today the thought of it is empowering.

Amidst all this feeling of belonging and familiarity, there was still something missing. When reading about people’s experiences with ET, I was happy as I could finally relate to people who experienced the same everyday things as me. However, I longed to share my experiences with someone who was a similar age to me. That was the main reason I started to blog about my life with ET and why I am writing this now – to reach out to the young people with ET who want someone to talk to about what they are going through.

Until three years ago, ET was something I would always try to hide. It was probably pride above anything else, but I didn’t want anyone to see a weakness in me. I look back and it saddens me that I thought of it as a weakness for so many years; something that I needed to keep private. In all honesty the ‘secrecy’ only made it worse. The constant fear that someone would catch me off guard was exhausting and all-consuming. I often felt trapped in this ‘reality’ I had created for myself. It was only after I went ‘public’ with my ET that I felt truly content. It felt as though a heavy burden had been lifted and I could finally breathe clearly. If there is anyone out there with ET who is not getting the full support they need, I cannot stress this enough: tell your teachers, doctors, friends and even family if you haven’t already. After all, it is a medical condition and not something that we should ever be ashamed of.

I have now just turned 24 and started a new job. I feel like a new chapter of my life is beginning; a chapter in which my ET will not hold me back. Once I become more settled in my job, I would like to begin a monthly or bi-monthly online event for young people with ET. After speaking with young people from all over the world who have reached out to me through my blog, I have discovered they all have a common wish – to be connected and share their experiences with people who know exactly what they are going through. In this online event we can share our stories of ET and provide each other with tips we have come up with. I hope to provide more details of this in the coming weeks if anyone would be interested.

If you wish to reach out to me, you can find my social media details on my blog- just send me a message!

https://mytremorsandme.wordpress.com/

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