Once again, the health indicators see red. The World Health Organization issued its highest level of alert on Saturday to try to contain the outbreak of monkeypox, which has affected nearly 17,000 people in 74 countries. At the national level, the health authorities identified, as of July 21, 1,567 confirmed cases. To date, 96% of cases for which sexual orientation is reported have occurred in men who have sex with men (MSM), but all populations can be affected.
Detected in early May, the monkeypox epidemic is struggling to find a place in the discourse of public authorities. With long explanatory tweets, some patients help to speed things up. But holes in the racket remain. Interviewed by L’Express, four people infected with Monkeypox (English name) describe similar journeys: lack of prevention, medical wandering, feeling of loneliness and, for some, hurtful thoughts from relatives or strangers.
Thomas, 26, experiences his first symptoms on July 3. From this date, ten days pass before his diagnosis. “At the beginning, I had a big lymph node in the neck and a big fatigue”, he rewinds. The young man makes an appointment with the doctor, who suspects mononucleosis. The test is positive. However, his symptoms change: fatigue turns to fever and rashes appear on his body. Five days after the signs of illness, he went to the Bichat hospital in Paris, before being asked, for lack of space, to return the next day.
“We are thrown into the unknown”
“I had a gray and very swollen tongue, my whole mouth was filled with lesions. A real battlefield,” he recalls. The diagnosis is all the more difficult to understand as these symptoms were not yet listed on the site. sexosafe.fr, dedicated to the sexuality of MSM people. It will be updated once Thomas’ story is revealed on social media. “The doctors are very little informed, we are thrown into the unknown”, sighs the twenty-something, without blaming the caregivers. For several days, he does not sleep or eat because of his very acute sore throat. On July 13, he was finally diagnosed.
Often the pattern is the same, notes Sébastien, 32. “When we talk about our symptoms, we are asked to be screened for STIs (sexually transmitted infections). In the end, we wait 72 hours for the result and this is not the right track. In total, the patients lose a week , during which they are contagious without knowing it.” On several occasions, the patients describe an obstacle course, sometimes violent, to obtain a diagnosis.
At the beginning of July, Julien, 34, performs additional examinations at Bichat hospital. Sure of themselves, the caregivers prescribe a PCR test. Very quickly, his symptoms worsen, he has an increasingly important edema and “the pubis which swells”. He will have to return to the health establishment two days later and force himself to be examined. : “I managed to pass this stage.”
Arriving inside the proctology department for a battery of additional tests, the 30-year-old is asked to join two other people installed in a waiting room dedicated to monkeypox positives. “The third one had a lot of pimples, he couldn’t sit up at all. He starts crying and he’s freaked out.” Between the waiting room and the place of consultation, the wall is very thin. “We hear the screaming cries of the patient before us. There is no intimacy”, indignant Julien. Once his turn, the other patient will also shout.
“Take the risk of making a forced coming out”
“I imagined it was a bit like Covid-19”, resumes Julien, denouncing the lack of communication on the pain that Monkeypox can cause. In the absence of treatment, doctors can administer strong painkillers, such as morphine or tramadol. And to the physical pain, is added the psychological suffering accentuated by a three-week isolation. A period of time where medical support remains non-existent. “It’s a little destabilizing,” also admits Sébastien.
Another thing that seems surprising to him: the absence of contact tracing. ARS Ile-de-France does not contact him to write the list of his contact cases. When he calls out to him on Twitter, the institution replies: “Hello, contact tracing is no longer carried out for each case declaration, however contact warning [le fait que les personnes infectées préviennent elles-mêmes leurs partenaires, NDLR], is strongly recommended each time”. “I met a few people who hadn’t come out. But to announce that you have monkeypox is to take the risk of revealing your sexual orientation and of making a forced coming out.
“You don’t pay attention, you don’t protect yourself…”
To overcome the lack of information and guide isolated patients, the LGBT community is getting organized on social networks. For Sébastien, “doing prevention was also a form of activism.” Very quickly, sick people weave virtual links and use these platforms as a place of prevention on the disease. “It was wonderful,” recalls Corentin, 27, one of the first to describe his symptoms on Twitter. Diagnosed in early July, he writes long threads to talk about monkeypox. Other people will follow. A reactivity that is not surprising: “The gay community is more focused on sexual prevention. We get tested every three months, unlike heterosexuals. I find it very ironic that we are regularly attacked on this .”
The other side of the coin is that by exposing themselves, they become the catalyst for many hateful messages. Corentin does not slip through the cracks. Ditto for Julien, appalled by the messages he reads under the resumption of one of his posts on Twitter. “For example, people were saying stop having sex, there was a wave of insults.” Despite these online attacks, the four young men were able to count on the support of their families, but Corentin does not forget the hurtful thoughts of some of his friends, with whom he cut ties.
“You take the PREP, you don’t pay attention, you don’t protect yourself, you sleep from right to left (…). It’s a bit like when you say to a girl who wears a short skirt that she deserves to be harassed”, annoys Corentin, who has cleaned up his relationships. With this epidemic, some fear a resumption of the stigmatization of gay people and the resurgence of clichés. All things considered, Corentin concludes by drawing a parallel with the start of the AIDS epidemic in the 1980s. facts. With each epidemic, he needs his scapegoat.”