Tuesday, July 5

If you have persistent COVID like me, don’t lose hope

COVID-19 does not affect everyone the same. For some it is a mild illness. For others, lethal. In my case, it turned into a little-known illness that doctors call post-COVID-19 syndrome and that most people know as persistent COVID-19.

I am a professor of infectious diseases and one of the first people in reporting persistent COVID-19 in the UK, where it is estimated that there are one million people experiencing the wide range symptoms that are characteristic of this condition. Just as the coronavirus causes illnesses of varying severity, each person’s experience with persistent COVID-19 is different and personal.

I want to share the story of how I recovered. For those still struggling with persistent COVID-19, I want you to have hope and know that recovery is possible.

When I caught COVID-19, I was left helpless with headaches, muscle aches, exhaustion, and chest pain for three months. At one point I felt better and tried to follow an intensive training session online that sent me straight back to bed for another week. Several months of malaise, exhaustion and brain fog followed.

As a medical scientist I wanted to make sense of the random nature of my illness, why there were days when I had serious setbacks. Using an app to measure fatigue, I would record my symptoms several times a day and try to relate them to my mood, my diet, and other activities. I became obsessed with my symptoms. I was looking for explanations in Facebook groups, I kept thinking about the causes, and I began to wonder if I would ever recover.

Hearing other testimonials helped me

Chance led me to a path of recovery that very few have access to. An academic fellow put me in touch with a person who had recovered from chronic fatigue syndrome (also known as myalgic encephalomyelitis) and who became my “recovery mentor.”

The compelling explanation they gave me about what was going on in the brain and body changed my understanding of my own symptoms. I found other personal stories in Recovery Norway, a website created by people who had recovered from myalgic encephalomyelitis. The stories collected on the Internet by the group gave me hope.

I realized that the contagion of COVID-19 had probably induced a physiological stress response, putting my brain in a state of high activation with an immediate effect on my immune, hormonal, cardiac and gastrointestinal systems. When I got sick, my brain shut me down with fatigue, like it’s supposed to, until I recovered.

My nervous system was looking for red flags, described by Oslo physician Vegar Wyller as “false alarms for fatigue”, and after a while, classical conditioning (learned by association) triggered the “flashback” symptoms in response to those cues.

Finding an explanation, understanding it, and accepting it helped me. I’m not saying I’m going to help other people with post-COVID-19 syndrome for sure, but maybe I am.

My recovery progressed rapidly in the next two weeks. Every time she had symptoms, she used visualization techniques. I would do little meditation exercises or, if I was exhausted, I would focus on good memories and relive them. I started exercising carefully, taking short, low-intensity bike rides. I was thus exposing myself to small doses of daily activity, but without increasing my energy consumption too quickly. I felt very different, happy, and I was finally able to go back to my usual physical training.

I had previously booked a vacation on the Caribbean island of Grenada and I went there with some friends. Unfortunately, I got dengue fever. I recovered, but a few weeks later, back home, my doctor told me that my liver enzymes were slightly abnormal, something to expect after dengue.

Worry made me react, maybe I had real organ damage? Fatigue returned and the alarms sounded again. I became so fatigued that it was as if I had been drugged. But my recovery mentor made me react and I realized that everything had been activated with the news about liver enzymes. I also understood that even though the feeling was real, I had some control. On a frosty afternoon, I showered and went to Sefton Park for a training session – it was an incredible feeling, like a switch had been flipped.

Persistent COVID-19 is a new term and is made up of a variety of states that doctors are still trying to unravel. For some people, COVID-19 has caused serious tissue damage. My experience with persistent COVID-19 has fortunately not resulted in organ damage, although that was what I feared from the beginning.

Instead I had a persistent COVID-19 from deep exhaustion. At that time it was terrifying but if I got out of there it was not thanks to tests or medications, but to listen to those who had already recovered. Trusting my recovery mentor and having a credible explanation for what was happening to me allowed me to put my mind to work to reinterpret my symptoms.

Persistent COVID-19 is horrible and it’s real. I don’t wish it on anyone. It is different for each person, and the recovery story does not apply to everyone. But there are testimonials from people getting better, and one of those allowed me to find a path to recovery. I hope that as we try to improve our understanding of this aspect of the pandemic, sharing my story will help others feel relieved as well.

  • Paul Garner is Professor of Infectious Disease Research at Liverpool School of Tropical Medicine

Translated by Francisco de Zárate.