Living with Tremor Has Given Me Practice in Advocating for Myself

Posted on August 24, 2020

Each semester, the IETF awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our fall 2020 scholarship recipients.

By Elizabeth Carroll,
University of Massachusetts, Amherst

When describing essential tremor (ET) to new friends, I relate it to public speaking. Most people’s hands shake when they address a crowd. “Take that, speed it up a tad, and that’s a good day for me,” I explain. The public speaking comparison is more than just a helpful analogy; my tremor and public speaking have always been intertwined. At age 14, I was diagnosed with ET and discovered my love for law.

A quiet student, my favorite parts of high school debate and mock government were research and writing. Law and politics, naturally opinionated and outspoken fields, had other plans. Presentations filled me with dread. I was already anxious about public speaking and self-conscious about my tremor, feeding a vicious cycle.

In search of a place to hide my hands, pockets became a requirement for my clothes. As a more practical solution, my neurologist prescribed Propranolol. Propranolol doesn’t work for everyone, including my great aunt, but it did wonders for me. With Propranolol, my new debate partner, my speeches became as powerful as I felt empowered.

Propranolol stabilized me. My public speaking jitters went out the window, perhaps a combination of blocked adrenaline and more “normal” shaking. However, the pill soon lost its luster. When I needed my fine motor skills, Propranolol was an invaluable tool. Yet, when it came to my public speaking extracurriculars, Propranolol became a crutch to mask my disability and feign self-esteem.

I started to use my prescription less and less, coinciding with crowds getting larger and larger as I rose to leadership positions. I no longer left my hands in my pockets. My shakes rose above the podium with my expressive gestures for everyone in the room to see.

Without Propranolol, people with good intentions felt the need to comment on my tremor. Once, on stage, another candidate for office gestured to my hands and whispered, “Wow you were pretty nervous for someone so good.” Similarly, an interviewer drew attention to my disability and declared, “I’m friendly! There’s no need to shake like a leaf.” At dinner one night after I just spoke, a peer mistook my tremor for a medical emergency and created a scene.

When I was first diagnosed years ago, the aforementioned comments would have mortified me and caused me to hide my tremor more than I already did. Now, I use those moments as an opportunity to inform others about ET. In doing so, I’ve gained the perspective and empathy to recognize that most people who approached me were genuinely trying to be helpful.

The past five years of living with my tremor have given me plenty of practice advocating for myself. Leading uncomfortable conversations about my tremor has given me the confidence to advocate for others. A rising sophomore majoring in economics and legal studies at University of Massachusetts Amherst Commonwealth Honors College, I aspire to work in public interest law to reduce disability-based employment discrimination.

2 thoughts on “Living with Tremor Has Given Me Practice in Advocating for Myself

  1. Hi wht I. Av just read about you is fantastic , I started with head tremors 12 months ago , though it’s worse wen I lay down to go to bed , I cannot sleep and I’m taking 160 mg propanol now , I’m 53 and I run my own hairdressing salon , My head shakes sometimes in the day , I’m ok with tht , I was wondering if the medication was making my sleeping worse ? Any advise you cud give me wud be much appreciated thankyou .

    1. We’re so glad you found us! You are one of more than 10 million people who struggle with essential tremor. Propranolol is a commonly prescribed medication for ET, but there are many others. Of course medication impacts everyone differently so please talk with your doctor about what you are experiencing. Many people with ET commonly experience sleep issues so it may not be your medication. It could be the stress of the condition that’s disrupting your sleep. I wanted to make sure you saw this “Patient Handbook” on our website. It provides a wealth of information about ET, including common medications and their side effects.

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