Very vulnerable to a severe form of the disease, many of them continue to isolate themselves. And feel excluded from a society that has abandoned the mask and the fear of the virus.
The certificates circulation, hydroalcoholic gel, “we are at war” by Emmanuel Macron… Three years after the start of the first confinement, on March 17, 2020, the Covid-19 pandemic has left traces in memories and has sometimes taken away relatives or caused persistent symptoms in patients. But the restrictions did not last, since there is no longer any question of them today. However, many people, particularly vulnerable to the virus, continue to fear it. This is the case for immunocompromised patients and other patients with significant comorbidities. “In fact, we have never been deconfined”summarizes Lise who, like others, responded to a call for testimonials from franceinfo.
The vulnerability criteria, recognized by decree, still concern millions of people, including those under 65. Among them are the 300,000 immunocompromised people in France, overrepresented among intensive care patients at the height of the epidemic, whose weakened immune system cannot fight infections. Before 2020, “I was already vaccinated against the flu, but I was not afraid of ending up in the hospital”recognizes Vincent, a kidney transplant recipient, who has been taking medication for almost 20 years that weakens his immune system (we talk about immunosuppressive treatment). “The Covid has highlighted the danger in which we live.”
“This pandemic will not end”
Many of these patients have “closed the hatches” and have not reopened them since 2020, as summarized by Raynald, who only sees his partner and his 5-year-old son, in distance education since the start of the pandemic. “I went to the cinema, to museums, to the library to look for books… I no longer have a life.” Alice, in the same situation, had to create “a protocol” with her schoolboy son, whom she raises alone. “I don’t make him change his clothes when he comes home anymore, but he washes his hands, he stays in his room, we don’t eat together anymore.” Torn between the fear of depriving him of his youth and that of being contaminated, she has to endure a heavy “mental load” : “If I catch the virus, I risk orphaning my son.” Cut off from most of her loved ones, her work, the activities she practiced, she still feels “on a deserted island”.
“Below our house, there is a restaurant. Life goes on before our eyes, and we cannot participate in it.”
Aurélie, immunocompromisedat franceinfo
Aurélie, who went out a lot before the pandemic, also gave up her social life, only seeing friends wearing the mask or having taken a test. As a blended couple, she had to make a more radical decision when wearing a mask at school became optional: she and her companion entrusted their teenage children to their other parents, “so as not to impose a monastic life on them”. “I see my 17-year-old son for one hour a month, outside when it’s not too cold. We chat and I come home. We can’t go to a movie or go bowling like before.” Each time, distance remains the rule. “I haven’t been able to hold him in my arms for three years.” His companion finds his children every other weekend, then isolates himself for a week, the incubation time of the virus. “We shouldn’t have to make these life choices. We thought it would only last two, three months, but it’s dragging on. This pandemic isn’t going to end.”
“All this makes me misanthropic”
Over the months, these vulnerable patients have seen the rest of society resume the thread of an almost normal life and gradually abandon the mask. In public places, the risk of transmission of the virus has therefore increased. “At the start of 2022, I absolutely had to work”, remembers Madeleine, illustrator, who notably sells concert posters. She then set up her stand in front of a room in Lille, where she lives. “It was full, there were more than 100 people and I was the only one wearing a mask. While the hospitals were crowded, I was taking a huge risk. I experienced it very badly and I haven’t done it again.”
Sometimes, relations are also strained with those who do not understand the precautions taken by these patients. Several people interviewed by franceinfo claim to have done, voluntarily or not, “sorting” in their dating. “Some were understanding when we were at the heart of the epidemic, but are less and less soregrets Alice. They ask me if I’m making fun of them, when I’m just trying to live.” Anna “don’t trust anyone anymore” after falling out with a friend who gave her Covid-19. Before one of their parties, “she went to a concert, without telling me”.
Over time, “a gap is widening” with loved ones who have resumed a normal life, adds Aurélie. She has the feeling “to have taken the red pill” who in the movie Matrixreveals the harsh reality of the world and the“individualism” that goes with. “I think it would be difficult for me to resume a normal life. It all makes me a bit of a misanthrope”she says.
“I understand what it means to be left out”
In public, many also note that it is now difficult to go unnoticed behind an FFP2 mask. They say they are observed, either as paranoiacs, or as contagious patients to be avoided. Vincent feels it heavily and notices “sideways glances”. “People told me that I did not understand that the Covid was over”, he testifies. Transplanted, he must regularly justify himself to those who are surprised at his caution. “I now understand what it means to be set aside for the majority to keep moving forward.”
A framework in a local community, he chose to resume work face-to-face, always masked or alone in his office. But others refuse, often on the advice of their doctor, and the situation can become tense. Alice claims that her employer initiated dismissal proceedings against her and several of her colleagues, between Christmas and New Year’s Day, on the grounds that the telework agreement in their company did not allow them to stay at home permanently , as they had been doing for three years.
“For my managers, the state of health emergency is over, so there is no longer any risk.”
Alice, immunocompromisedat franceinfo
And regret: “I’m not just losing my job, it’s also one of my only windows into my life before.”
Vulnerable people who cannot telework have long been entitled to partial unemployment or its equivalent, the special leave of absence (ASA), for civil servants. This is no longer the case since March 1, placing some employees with their backs to the wall. A high school teacher, Lise prepares to return to her school. She could not obtain a reduced class, allowing distancing: “No matter how hard I fought… In National Education, there are no means. We are asked to adapt.”
“I avoid thinking about the future”
The professor, suffering from a form of myopathy, fears above all the consequences of the virus on her pathology. Precautions are even more crucial for the immunocompromised, in whom the vaccine has little effect or offers only limited protection over time. “I say I have a four week honeymoon” after an injection, summarizes Alice. There remains the option of monoclonal antibodies, a heavy treatment administered preventively to certain patients, but whose effectiveness varies according to the variants. As for Paxlovid, the only drug that can be administered in the event of contamination, it remains little prescribed.
For lack of an effective remedy, Madeleine and Aurélie have joined online collectives campaigning for better protection of vulnerable people. “We are trying to make ourselves heard by the Ministry of Health, to have air purifiers installed, CO2 sensors [qui aident à évaluer le risque de contamination et le besoin d’aération d’une pièce]summarizes the latter. For the moment, I am not hiding from you that we are drawing a blank. Many share this dismay, like Elise:
“We are told about living with the virus, but for that, you have to adapt. You can live in -15°C outside, but not in a swimsuit.”
Elise, immunocompromisedat franceinfo
Like others, she struggles to keep hope for a return to certain habits, as a precaution towards vulnerable people, such as wearing a mask in public. And dare not imagine the rest of his life if the virus continued to circulate: “Honestly, I avoid thinking about the future.”