Accept that you are no longer the same. Without any recognition of the disease that pulverized his life. This is the double penalty to which Tiphaine, 49, feels condemned, as imprisoned at her home in Plan-de-Cuques. Contaminated by Sars-cov2 in March 2020, this educator in a hospital child psychiatry department still suffers from prolonged symptoms of Covid-19 today. “But since I did not have a positive PCR test, and even my serology is negative, I do not enter any administrative box”, she breathes.
This Covid, which we do not recognize administratively, got the better of her good form as an athlete, her job, a romantic relationship, an intense community life. “No proof, no disease“, occupational medicine and several medical experts repeated to him. Today, his income has halved – “not easy to live with 1000 € per month“- and his fight for treatment is coupled with a quest for recognition as a Kafkaesque occupational disease. To do this, the law requires proof of a positive PCR test and of having been treated with oxygen therapy. “At the time, when a friend called 15, I was even advised not to go to the emergency room. I stayed home with a double dose of antibiotics, she sighs. I am convinced that I was infected at work. I didn’t go out anymore, I just did that.”
Dyspnea, post-exercise discomfort, overwhelming fatigue, cognitive disorders, Tiphaine develops a host of symptoms after the acute phase. A scanner even attests to a loss of 50% of his lung capacity. She resumes work 11 months later but does not last. “I couldn’t follow a conversation, a meeting. At home, I would take the damp laundry out of the washing machine, start hanging it out and then fold it wet. And suddenly, I understood that I was doing anything… she remembers, moved. Joint, tendon, kidney and thyroid problems were added. And on the grounds that there is no biological marker, they ended up telling me that I had to go for treatment in psychiatry. It devastated me. At that time, I couldn’t even walk. I no longer knew how to go to my mother’s house a few kilometers away without putting the GPS on. I’m not proud of it but I contacted a structure in Switzerland, I was thinking about assisted suicide…”
“Telling a patient that the long Covid is in his head is catastrophic, often repeats Amélie Ménard, infectious disease specialist at the AP-HM, who is a reference on the subject. This can be very traumatic, making the patient feel guilty, who will take even longer to recover. And yet…
After two years of medical wandering, a tepscan finally highlights in Tiphaine a cerebral hypometabolism, typical of long Covid. “I am a caregiver and I know very well that it is not up to the patient to tell the medical teams what is good for him. But I knew very well that it was not in my head. I am athletic, I know my body well. I also thought that I was going to receive support from the institution but without this positive test…”. Last September, seven doctors and researchers* pointed out in an article this kind of particular situation: “Some patients may have negative serology (in other words, no anti-SARS-CoV-2 antibodies are found in their blood) and yet have been infected with the virus. Some people do not produce antibodies after infection. “(…) The fact that some Covid long patients had negative serologies may have cast doubt on the veracity of their syndrome and their initial infection, especially when they did not benefit from PCR. ask these specialists.
It took two years of wandering and great distress before medicine put “words about his ailments“, take care of some of his symptoms, objective “a long Covid chart“. Swinging, Tiphaine does not want “spend the rest of his days at home” but still can’t get back to work. She says “the void that forms around you over the months“, isolation and alternative therapies (hypnosis, neurofeedback, meditation…) in which she uses up part of her savings, in parallel with a more academic follow-up. “I want to put all the chances on my side, she slips into a smile, before changing her mind. I know it takes me time to recover physically but I don’t know how much…” To hold on financially, “I’m going to have to ask for long sick leave for depression. It wouldn’t be shameful but that’s not what I’m suffering from. I feel that I am entitled to this recognition. I don’t understand how we can be left in such a mess.”
“Covid long: what do scientists know today?”, The Conversation 22 September 2022.