The Process of Accepting My ET Diagnosis

Posted on March 7, 2022

Jennifer’s Story

“You have essential tremor (ET). It’s a neurological movement disorder that has no cure, and is progressive.” This is what my doctor told me. How does one process that at 34 years old or at any age? The fact is it may take time. It has taken me two long months and hours of research to come to somewhat of an acceptance of it.

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With the shock of the news, I was relieved to know I am not alone. There are 10 million more people who suffer from this incurable disease. At times it may seem frustrating to have this disease, but then I think to myself about the many people out in the world who have it worse than me. I feel we are all here on earth with a life sentence to serve and mine now is just harder and more unique.

It started for me two years ago, with my right hand shaking. I just brushed it off. As time went on, I noticed that the hand twitching would happen more than occasionally. For instance, when I was out with friends, or trying to write, there goes my shaking hand that I couldn’t control. I was embarrassed by it and tried to hide it, but at the same time shrugged it off as it was nothing. Then six months ago, I started to have these tremors occasionally when I was sleeping, not only in my hand, but inside my head as well.

I didn’t speak to anyone about it. I hid it from family and friends so that they wouldn’t worry. My immediate family had started to notice my right hand shaking from time to time and kept encouraging me to go to the doctor. But being the stubborn person I am, I ignored them. Then two and half months ago I had a dream. and it was omni essence in the fact that I saw my deceased grandmothers and my aunt with hands folded looking over me and saying “go Jenny.” Then I woke up and decided to make an appointment with the neurologist.

After receiving the news about my ET, I came home to tell my mom what the diagnosis was, and she had all these questions – questions I didn’t even think to ask the doctor. But, you have to love Google, because they had the answers as well as Youtube videos right there for you to read and watch. Once you start to get engulfed in the knowledge, your mind starts to wonder what your future is going to be like. You start to ask yourself questions like, “How will I ever be able to hold my own child without harming them?,” “How does one date with shaking hands, voice, and head?,” and “How will I ever be able to do anything on my own again?”.

Seeing what my future holds was mind boggling. I felt I couldn’t think about that and just have to focus on the present. After going to the doctor and getting put on these medications, it’s almost like playing roulette – I don’t know if they will hit! Already with the meds, I am hit with a lifestyle change, no more drinking, as well as having to watch what other medication I take that could interact with these meds. Now how does one tell friends or family this? My choice was not to tell, except for a select few, until I could get a better understanding of the disorder. Maybe I chose to keep it secret because if I chose to tell them, it would be more me having to accept that I have this disorder and what my future could hold. And I didn’t want to hear, “I’m sorry!”

I chose to join all the support groups on social media, read books and all the articles I could get my hands on. I felt that maybe someone would be able to understand what I was going through. The support groups allow me to see the tremors and their progression as normal and that I am not alone. They give me access to other treatments that may be out there to try, as well as where to look to get help. Not only do they help me cope, but now writing this article is also allowing me the place to express the past two months of my life, and to let people in to tell them what is wrong with me. For that I am grateful!

Categories: Personal Stories

8 thoughts on “The Process of Accepting My ET Diagnosis

  1. Congratulations on being able to tell us your story. I was diagnosed over 20 years ago and was not able to talk about it until very recently. Now my friends, who noticed but were afraid to ask, are glad to know why I shake. Good luck!

  2. Jennifer,
    You have written what I feel. YOu should write a book or at least a journal. I think you are brave for writing your innermost feelings. I, like you, have ET. Thank you for sharing.

    1. Wow! Thank you! This comment right here is all I needed to feel after sharing! You kind words mean a lot!

  3. I commend you and sympathize as well. I have had ET for nearly 50 years. I won’t argue – it isn’t fun! However, regarding raising children – you are going to be just fine!! I’ve raised 4 children and babysat/loved on 10 grandchildren. You’ll have an opportunity to educate them on those with different issues.

  4. I’ve had tremors for about 20-30 years. They are progressively getting worse. I find it hard to write. Luckily I’m retired and don’t have to do anything. Your words are inspiring. Yes, it could be worse. I had a close friend battle cancer for 3 years. I go whenever I can. I don’t let ET define me!

    Stay strong.

  5. Your story was inspiring and I command you on your positive outlook! I only hope that one day s cure will be found and you will get better. Till Then keep the faith🙏🏻

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