When I Raised Awareness for a Disease I Didn't Know I Had

You may have heard the quote “God works in mysterious ways.” I have come to agree with this.

About three and a half years ago, I thought I had pulled my right knee during track practice. We had every test possible done on my knee and they could not find anything. Yet I was in excruciating pain. This pain then progressed to both knees rather than just my right knee. Eventually I had pain in both knees, ankles, wrists, shoulders, neck and back. It started off mild. I was taken through almost every single test possible, and they still could not give me an answer.

My brain function changed completely during 10th grade. I often cried in class during tests because I couldn’t figure out why everything was so different. I looked at words and questions and couldn’t understand them or put them together. I could stare at a word, for an example the word “write,” and spend over 10 minutes trying to understand what “write” meant. As a result, I never finished my tests on time. I would forget everything I’d studied (now I know I have short-term memory loss). Sometimes I couldn’t understand the lessons I was taught, but it was weird; on the inside I understood, but I couldn’t bring my understanding into reality. My grades dropped in a matter of months.

I spent the next two years fighting to bring my grades up, staying after school to do homework. Our chemistry teacher checked our homework on certain days, but I asked if she could check mine on a daily basis so I would be motivated to have it done. But then I would forget about the homework, forget I had an an agenda, my fatigue would increase and as soon as I got home, I slept. I completely forgot everything until the next day when I was asked to show my homework. In the eyes of a teacher, this looked like laziness. Even my parents thought I was lazy.

Many of my high school teachers wrote on my report cards, “Ethel would benefit from remembering to do homework and remembering to hand in things on time.” This upset me because I knew I could do it, but somehow I couldn’t. It wasn’t depression, it wasn’t “laziness,” it was something more. But no one, not even a doctor, was able to provide us with answers.

As for my pain, I went from being someone who loved gym class to someone who needed an elevator key to get upstairs. Walking up the stairs hurt my ankles and knees, and I always found myself in the main office asking for ice.

In 12th grade, I had planned to take a weightlifting course with one of my good friends, but I dropped it after a few days because I couldn’t do anything anymore. Push-ups hurt my wrists, squats hurt my knees, just walking hurt my ankles and so on. I was a runner. I enjoyed CrossFit and wanted to become great at it. Being physically active and fit was my happiness. Over time things only kept getting worse.

How could I have pain no doctor could explain and have my memory decline at only 17? I would throw out my own valuables, shower with clothes on, put salt away in the freezer, spill an entire milk carton in the sink, throw dishes away in the garbage after washing them.

But I believe God had my back all along. Many may argue this was a coincidence, but I don’t see it as one. I believe he guided me into meeting the right people at the right time and at the right moment. In 11th grade, I saw a new student at school who was in a wheelchair. I had seen her practicing with the gymnastics team the day before, and I thought maybe she injured herself. I didn’t know her name or what grade she was in, and she didn’t know who I was. For some reason, as I walked out of the library to my locker, I had to turn back and go to where she was with her mom. I learned her name was Kamea, and she had Lyme disease. At the time, I didn’t know what Lyme disease was. I didn’t even know what a tick was. I read all the articles Kamea shared on Facebook, and one day, I decided to start a walk with her. She loved the idea. I emailed the founder of the Canadian Lyme Disease Foundation, who put me in contact with Lyme Ontario. Two of Kamea’s friends who also had Lyme disease joined us, and together we started the first annual walk for Lyme disease awareness in our district.

Over the following year, I raised awareness for Lyme disease. I was doing this for Kamea, her friends and all others with Lyme disease. But I had no idea I was also doing it for myself. I handed out ribbons at school, I made and put up posters and I even brought limes to school one day and asked everyone to do the Lyme disease challenge. I had no idea I was being educated on a disease I had, too.

Kamea and her parents reached out to me when they noticed my symptoms. They advised me to get tested for Lyme, but my doctor said I couldn’t have it. I was later diagnosed with fibromyalgia and “stress.”

My graduation was painful. I had to sit out my prom with a bag of ice.

A few weeks later, we moved a new town, and I was advised by a doctor to see a specialist in the U.S. After being tested a couple more times, my test results came back positive. Proof of Borrelia burgdorferi (the spirochete responsible for Lyme) in my body. With two co-infections, babesiosis and bartonellosis (babesia and bartonella).

I am finally undergoing treatment for something I should have been tested/treated for almost four years ago.

I’ve gotten worse since the walk. I’ve been in pain for almost four years now and have experienced a lot more symptoms. But I will get better in a few years’ time. I am unable to work this summer due to being sick and going through treatment, but I know it will be worth it in the end.

By organizing the walk, I was prepared for what was to come. I was taught about why it was important to keep fighting for answers. I was led to meeting the right people, and finally I had proof I was not “lazy” — I was sick.

I believe God led the path and I followed. If I had walked passed Kamea and not asked what happened, I don’t know what today would’ve been like. If I had not asked Kamea about starting a walk together, I don’t know what this year would’ve been like.

The author and her friend wearing Lyme Walk t-shirts
From the left: Ethel and her friend Kamea

Treatment is a long-term process as the disease had been in me for quite some time, and I can’t wait to start feeling better someday.

If you or someone you know has seen numerous doctors over the years and are still looking for an answer, don’t give up. Keep looking and keep fighting. I believe it’s about having faith and following the signs. These signs may be a gut feeling, a dream or a thought. You have to believe in yourself in order to take the first step.

Follow this journey on Chronically Trying.

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