If you have long Covid, as I did, non rinunciare alla speranza. Recovery is possible

Covid-19 affects people in a range of different ways. For some its a mild illness; to others, it’s lethal. Per me, it turned into a poorly understood condition that doctors call post-Covid syndrome but most people know as long Covid. I’m a professor of infectious diseases, and one of the first people in the country to have reported on long Covid. Adesso, un estimated one million people in the UK say they are experiencing symptoms from the wide range that make up this condition. In the same way that the virus itself causes illness of varying severity, everyone’s experience of long Covid will be different, and personal to them.

I want to share my story of how I recovered. For those still battling with long Covid, I want them to hear that recovery is possible, and to have hope.

After being first infected with Covid-19, I was incapacitated with groggy headaches, muscle pains, exhaustion, and chest pain for three months. An early attempt at an intensive online exercise class, when I felt momentarily better, sent me straight back to bed for a week. Several months of malaise, exhaustion and brain fog followed.

As a medical scientist, I tried to make sense of the random nature of my illness, of the days with severe setbacks. I used a fatigue app to record my symptoms several times a day and tried to relate them to my mood, my diet and other activities. I sought explanations on Facebook groups. I obsessed about my symptoms. I ruminated about the causes. I began to wonder if I would ever recover.

Serendipity ultimately led to a path of recovery far too few have access to. An academic colleague connected me to someone who had recovered from chronic fatigue syndrome/ME, and who supported me as my “recovery mentor”. Their compelling explanation of what was happening in relation to the brain and body changed my understanding of the symptoms I was experiencing. I found other personal stories on Recovery Norway, a website set up by people who have recovered from ME/CFS. The narratives the group has compiled gave me hope.

I learned that my Covid-19 infection had probably induced a physiological stress response that put my brain in a state of high activation and had an immediate effect on my hormone, heart, gastrointestinal and immune systems. When I got sick, the brain shut me down with fatigue, as it should do, until I recovered. My nervous system scanned for alarm signals, described by the Oslo-based physician Vegard Wyller as “false fatigue alarms”, and after a time, classical conditioning (learned by association) caused the “kickback” symptoms in response to these signals.

Finding an explanation, understanding it and accepting it helped me. I am not saying that it will definitely help others suffering from the post-Covid-19 syndrome, but it might.

Over the next two weeks my recovery moved quickly. I used visualisation approaches with my symptoms: I would practise simple meditation or, when fatigued, concentrate on beautiful memories and relive them. I started carefully managed exercise with short, gentle bike rides. This exposed me to small doses of activity each day but stopped me increasing my exertion of energy too quickly. I felt very different, happy – and was eventually able to return to my regular physical training.

I took a holiday with friends in Grenada that I had previously booked. Unfortunately I developed dengue fever. I recovered, but several weeks later, back home, my doctor reported that my liver enzymes were slightly abnormal – to be expected after dengue. The associated worry set me off. Maybe I really did have organ damage. I had a relapse of the fatigue and the alarm bells started ringing again. I felt at one stage so fatigued that it was as if I had been drugged. But with a friendly nudge from my recovery mentor I realised the news about the enzymes had triggered me; that although the feeling is real, I also have some control. I showered and went off to Sefton Park on a frosty evening for an exercise class: it was an amazing feeling, like a light switch had been turned on.

“Long Covid” is a new term, and is a mixture of conditions that doctors are still trying to fully understand. For some, Covid has caused serious tissue damage. My experience of long Covid has not, thankfully, included damaged organs – although I feared this early on. Anziché, I had a post-viral syndrome with profound exhaustion. It was terrifying at the time, but recovery didn’t come from tests or medicines, it came from hearing from those who have recovered, trusting my recovery mentor, and having a credible explanation of what was happening to me. With that, I could then use my mind to reinterpret my symptoms.

Long Covid is horrible. It is real. I would not wish it on anyone. It is also different for everyone, and one person’s story of recovery will not apply to all. But stories of people getting better are out there, and one enabled me to find a path to recovery. I hope that, as we wait to further understand this aspect of the Covid-19 pandemic, others too might derive some relief from hearing me share my story in the same way.

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