Since developing symptoms in 2021, Andrea Vanek has spent most of her days in front of the window in her Viennese apartment, observing the world outside.
Her long Covid was diagnosed after a long therapeutic wandering, and even today this 33-year-old Austrian woman makes as little effort as possible, terrified of suffering another episode of disabling muscle weakness.
"My life is on hold because I don't know how long this disease will last," she told AFP, making opening a simple bottle of water impossible when the attacks occur.
The illness initially manifested itself in dizziness and heart palpitations, which suddenly began to prevent her from taking short walks before derailing her life. In the midst of retraining, she had to abandon her studies to become a teacher of applied arts.
Just five years ago, the disease emerged in China. Since then, it has officially killed more than seven million people worldwide, but the World Health Organization (WHO) believes these figures are a major underestimate.
– “Life turned upside down” –
Of the 777 million cases, millions suffer from prolonged symptoms, the most common being severe fatigue, shortness of breath, muscle pain, brain fog.
About 6% of people infected with the coronavirus develop a long form. “A serious problem, affecting a lot of people,” said Anita Jain of the WHO’s health emergencies programme, with reinfections increasing the risks.
Chantal Britt, who lives in Bern, Switzerland, contracted Covid in March 2020. Her life was “turned upside down,” forcing her to “reinvent” herself.
"I used to be an early riser... Now it takes me at least two hours to get out of bed because I'm in so much pain," she explains.
"I stopped hoping to wake up feeling great, but feeling so old and broken still surprises me," says the 56-year-old, who describes herself as a former "workaholic."
For this former marathon runner, sport was a "therapy" and she misses moving. She now has to plan her daily life down to the minute, for example by planning places to sit when she goes shopping.
Claiming to have lost her job in communications two years ago after asking to reduce her hours, she has obtained part-time work in academic research, notably on long Covid.
– “Invisible disease” –
The lack of understanding among those around her weighs on her: "it's an invisible illness and therefore stigmatized," regrets Chantal Britt.
"Even seriously ill people, who are at home in a dark room, who can no longer be touched, who collapse at the slightest noise, do not seem ill."
Women are more affected than men, according to the WHO, as are those who already have health problems. And about 15% of those affected have persistent symptoms for more than a year – more than 200 have been recorded.
Heterogeneous, more or less severe, they can fluctuate over time, leaving the medical community helpless. Establishing a diagnosis can also be a real ordeal.
"Today, we must redouble our efforts to help patients and doctors with the tools needed for early detection," says the WHO expert.
Their financial support is also being questioned as many patients are falling into poverty. Andrea Vanek has filed two lawsuits in the hope of obtaining more than the 800 euros per month she currently receives.
The sum is insufficient in Austria to cover his expenses, which are made heavier by medical bills and the purchase of dozens of pills. But both cases remain pending.
"For those who are studying or in training, it is a very difficult situation because we fall through the cracks" of social security, she laments.
Chantal Britt would like to see research advance on post-infectious syndromes, "which we need to know better," she believes. "Because there will be another pandemic and we will still be just as helpless."