Text: paul favre

Long Covid: harm of the doubt

Infected with Covid-19, Paul*, an employee from CHUV’s communication department, like many people, has the symptoms of the long form of the disease. Between paralysing doubts and reduced abilities, his experience echoes the blurred lines that still surround the disease. Testimonial.

The persistent fatigue is the main thing, as well as other tell-tale symptoms ranging from problems breathing, loss of taste and smell, to pain. Two years after the global emergence of Covid, 39% of adults who have been infected with the virus suffer from a lasting form of the disease, according to a study conducted by the University of Geneva. Amid all the incomprehension and efforts to reduce symptoms, a CHUV staff member shares his personal experience.

Tuesday morning, 8 a.m.
I arrive at the office for one of the many sessions this week. No matter how hard I concentrate, I’m always a bit slow, subjects come one after the other too quickly. I come out of it feeling incompetent. I’m afraid it will show.

The scenario repeated every week for more than a year, since I tested Covid-19 positive on 1 March 2021. I went back to work as soon as possible. When I went up the first flight of stairs: pain in my thighs, shortness of breath, fatigue. It will pass, nothing to worry about.

Month after month, the symptoms persisted. I feel muscle pain – impossible to crank up my window blinds, brush my teeth without changing – and always that feeling of tiredness. Once an avid hiker, I no longer climb the mountain, I walk along it. My thinking process is slow, I have memory lapses.

“No, I’m not ok”

My journey as a “long-Covid patient” started in August 2021, because I had difficulty breathing. What next? It’s all right, it must be in my head. In January 2022, I went back to see my doctor for persistent pain in my underarms. The consultation stretches on, we discuss all my symptoms. Just before leaving, the question I refused to ask myself was, “Are you ok?” With the answer “no”, I finally admit to a health professional that I am not well, and that exhaustion is causing anxiety attacks.
“I’m going to put you on bed rest, sir.” My sick leave lasted six weeks.

Yet, science says I’m perfectly healthy. Just a vitamin D deficiency, “like everyone else”. It’s paradoxical, but since nothing else is wrong, I earned the right to go to a post-Covid-19 consultation. Mine will be at Riviera-Chablais Hospital in Rennaz.

Coincidentally, I went there for the first time on 1 March 2022, exactly one year after testing positive. Even before the first examination and the first medication, I already feel better. Empathy, bright attitudes, listening, from the reception desk to the doctor. We often hear that medicine has become too technical, has lost all humanity, but I owe my recovery in part to the people I was lucky enough to meet along my hospital journey.

Answers come

A few weeks, a breathing test, a stress test and two fainting episodes later, I get a diagnosis: asthma and dysfunctional breathing. The first one, I’m familiar with. I dealt with it a lot until I was a teenager. Back to square one, with the same inhaler that I used 20 years ago. It makes me feel old.

For the second, dysfunctional breathing, the appointment was made at the Service of physiotherapy and occupational therapy at Martigny Hospital for nine sessions of ventilator rehabilitation. My physiotherapist’s name is Lars Denayer. He has an accent I can’t place (Flemish, it turns out) and he sees a lot of patients like me. “It’s never-ending,” he says. Although he was already practising respiratory physiotherapy before the pandemic, the virus has completely changed his profession.
“We have an excellent collaboration with our colleagues in pulmonology and physiotherapy, which allows us to adapt quickly to advances in research. It’s important.”

I spend my days off on physio. Thanks to Lars’s advice, exercises and encouragement, I make fast progress. So much so that I only need six sessions.

A restricted mind in a healthy body

In the meantime, I went back to work. But the year of long Covid has left its mark, especially on my mental health. My body is healthy again, but now I have to deal with my mind.
I have also been forced to reduce my social interactions to a minimum. Work drains all my energy. I panic if I have to organise things, see people. As for the future, I forbid myself to think about it until something changes.

After talking with Professor Pierre-Olivier Bridevaux, chief of the Pulmonology Service at the Valais hospital and head of the Pulmonology Unit at Riviera-Chablais Hospital, I realise that I’m not alone, and that I’m not exaggerating the difficulties I am experiencing. “The change in patients’ quality of life is by no means negligible. It is actually severe. For example, the quality of life of our patients suffering from dysfunctional breathing is measured by indicators similar to those used for people with cancer. It’s not your everyday illness.”

One sure thing: doubt

Although I’m still struggling to free myself from the doubt that continues to gnaw at me, especially since a second infection with Covid-19 in June 2022, the two people I’m in contact with are more optimistic. Professor Bridevaux feels that it is only a question of time and patience. “We must remain hopeful. Research is advancing all over the world. We have hope for new treatments that will target the biomarkers of the disease and perhaps, in that way, lessen the symptoms. But we are only at the beginning of this research. For the time being, no miracle pill.” /

RAFAEL, the post-Covid information platform
Rafael is the first interactive French-speaking platform on the long-term consequences of Covid-19. Launched in November 2021, it includes a chatbot that answers questions and provides information on post-Covid symptoms.
Due to the lack of tests at the beginning of the pandemic, the Service of primary care (SMPR) at Geneva University Hospitals (HUG) had to set up a remote monitoring system. The teams quickly realised that some patients were still suffering from symptoms. “We have the impression that we are being useful by providing information, and at the same time we are collecting important data. It’s a win-win situation,” says Professor Idris Guessous, chief of service with the SMPR. The data collected by this “participatory citizen tool” is then compared with data from standardised follow-up cohorts to “identify and confirm a signal”.
Today, Rafael has many partners in French-speaking Switzerland, including the CHUV and Unisanté, but also abroad. This openness is embraced and promoted by its designer. As Idris Guessous puts it, “The patient is the true expert. As a doctor, you tell me what you feel. I take notes and learn with you.”
There are many personal accounts of the effects of long Covid on the population. In addition to Rafael, various support or information groups exist, such as the platform Altea and the Swiss-German associations Long Covid Switzerland and Covid Langzeitfolgen.