One year sick with coronavirus
Three women describe their daily struggle with persistent covid, the symptoms that do not go away
Santa Coloma de GramenetIn March last year they were infected with coronavirus, just before lockdown, but they drag the sequels of the infection to this day. A year has passed and Àngela, Eva and Lara are still ill. They suffer from persistent covid. Or what is the same: day after day they relive the symptoms of covid despite having overcome the infection months ago. Fever, muscle aches, memory loss or uncontrollable diarrhea are some of the pathologies that most of those affected face -women, because persistent covid rages against women between 35 and 50 years old-, and everyday tasks such as drying their hair, reading or writing become difficult for them.
"I'm 35 and I have to train every day to climb the stairs. It's my usual body, yes, but aged, as if I have the energy demands of a 70-year-old. It's an unhealthy tiredness", Àngela sums up. At first it was a fever, but soon she began to feel sluggish and tired all the time, to the point of fainting. The trigger was the feeling of suffocation. And from then on practically all her memories became dark: her memory was also affected by the virus.
At that time, PCR tests were only carried out on patients who were admitted to hospital. Doctors only recommended rest and paracetamol for those who were mildly ill. "They said that in fifteen days I would get better, but as time went by, not only did the symptoms not go away, but they mutated", she recalls. She was no longer choking, but she suffered very strong migraine attacks. A fortnight later, however, the shortness of breath returned. It was two months before a PCR test could be done. It came out positive.
Eva, on the other hand, had to wait 90 days for a test, which in her case was negative. She did have antibodies, and was finally able to attribute her fatigue, blurred vision, sensitivity to light, and lack of concentration to a cause. "These are things that I find very disabling every day", she admits. Eva is still on sick leave and doing respiratory rehabilitation, but is on a waiting list for a visit with a neurologist. She'll have to wait another year or two. "This neglect is what worries me. The collapse of health care has meant that people with persistent covid have not recovered after a year" she says.
Victims of the protocols
Lara has felt desperate, disappointed and helpless; feelings shared by many of those affected by persistent covid. She repeatedly went to her primary healthcare centre - often overcrowded and with bunk beds in the corridors - and to the hospital because she was choking and the fever would not go away. She also found it hard to concentrate, read or even think, and felt fatigued all the time. "But as always, illnesses that affect women are trivialized. We were told that our condition was anxious or psychological and we were prescribed anxiolytics", she denounces, and describes the visits as "unpleasant and humiliating".
Lara was even told that she was ill because her partner had been admitted to hospital. Later, an ultrasound revealed that she had indeed suffered from pneumonia. "We were victims of the protocols: they questioned whether you were infected but did not test you and, at the same time, as you had symptoms you could not lead a normal life", she laments. A lack of understanding that Eva and Àngela also denounce.
With persistent covid, those affected never stop being sick, but there are difficult days and others that are horrible. The cycles of symptoms - or outbreaks, as they call them - are repeated but with different intensities. Àngela suffered a loss of neurons associated with working memory, the most immediate one, and there were days when she could not remember what she had just said while she was speaking. Now she has had to adopt a flexible work schedule, since she has to stop and sleep for a couple of hours at midday to recharge her batteries. "My body can't take it", she admits.
A new clinical guide
Neither Angela, Eva nor Lara have been at risk of death, but they have lost quality of life. "I have joint pains that are invalidating", says Lara who, due to covid, has developed autoimmune Sjögren's syndrome, which affects the eyes and mouth. "The body suffers irreversible problems", she adds. And although she tries to be active, "there comes a time when you have weekly doctor's visits and you never finish. It's a major psychological toll because life revolves around covid", she laments.
Thanks to an article in the ARA, those affected by persistent covid in Catalonia have been meeting and now there are 1,500 members. The collective denounces that many of its members have been on sick leave for a year and have to go through medical courts without being able to certify the disease. There are those who have not even been able to have a face-to-face visit with their doctor. "Since June we have been working with the Health Department to raise awareness among the CAPs and the Catalan Institute of Medical Evaluations (ICAM)", says Eva. And although the process has been long and slow, it has already borne its first fruits: soon the clinical guide of persistent covid will be presented, a "flexible" document and agreed on by those affected, the Health Department, and renowned experts to design the guidelines for the management and support of these patients.
"In record time, six months, we understood each other and reached a consensus. There was a will and the guide is the fruit. This is what gives meaning to the task of public servant," says Carme Bertral, secretary of the Health Department's Atenció Sanitària i Participació (Healthcare and Participation) and coordinator of the working group. The guide is aimed above all at primary care, so that each team can organise itself to attend to patients with persistent covid. "It is not a protocol, but a guide, which is better adapted to the characteristics of this pathology, the evidence for which will continue to evolve", explains Bertral. Strictly speaking, however, no specific units will be created, but the primary care centres will decide how to assign their professionals to monitor, visit and make the relevant referrals. "We have unified criteria so that individual opinions do not work against these people," summarises Bertral.