Dear Scientist:

Prior to 2020, I enjoyed a full life as a wife and mother. I loved spending time with my friends, family, and our three dogs. We were always up for game nights, camping, time at the nearby lake, and vacationing at the beach. I loved cooking and trying new recipes. My husband and I bought his grandparents’ old homestead in 2016 and began remodeling the cute little stone cottage there. We even made plans to begin homesteading.

However, my life was forever changed when the COVID-19 pandemic emerged.

On March 10, 2020, I began to show signs of illness after returning from a two week stay in Pittsburgh visiting friends. I slowly began to develop the typical COVID symptoms and called my doctors. At the time there were no tests available in our rural area, and I was classified as “presumptive positive.” We developed a plan to monitor at home. I had a relatively moderate infection and did not need to go to the hospital for care. 

While I did have a lingering cough, I thought that I was on the road to recovery and counted myself as blessed. About four weeks later, I began to notice that the recovery seemed to be taking longer than expected and the fatigue was becoming severe. In late April, I started experiencing new symptoms like crippling fatigue, odd sensations in my arms and legs, an unusually high heart rate upon standing, fluctuating blood pressure, severe brain fog and memory loss, horrible migraines, nausea and vomiting, severe hair loss, visual disturbances, low blood sugar, and tremors. By June, I was bedridden. So, at the age of 48, I had to move back in with my elderly parents so that they could care for me and my husband could return to his job. During this time, I was hospitalized for cardiac and endocrine issues.

I spent over four months with my parents trying to recover from something that was a complete mystery. It wasn’t until about September of 2020 that I began to hear of other stories like mine and I started to research my condition. It was then that I found articles, interviews, medical papers, and online support groups, and it had a name: long COVID. 

As I continued to suffer from long COVID, I was reinfected three times, once in 2022 and twice in 2023. These infections impacted my recovery at various levels. Today, in 2024, I am still experiencing the effects of long COVID, from extreme fatigue to seizures. No longer can I take each day as it comes. Rather, it requires careful planning and prioritizing to decide what I have the capacity to do each day. My husband has had to pick up the slack of my household duties, and our dreams to start homesteading have been delayed indefinitely. 

This is a debilitating multi-systemic illness with over 200 symptoms and is unique to each individual. I don’t want anyone to have to go through what I’ve been dealing with. What are scientists doing to address this mass disabling event to help not only those of us who are the “First Wavers” of 2020, but also for those who will be joining our ranks through repeat infections?

Sincerely
Tammy Wilshire
Long COVID Patient and Advocate