The physical manifestations of monkeypox are well known, but beyond skin lesions, fatigue and feverish episodes, patients and recoveries report various psychological repercussions related to pain, lack of information and support, but also with a certain stigma, even discrimination.
Although the WHO pointed out, on Tuesday, August 30, “encouraging” signs in the evolution of the monkeypox epidemic in Europe, the associations point out that the consequences for patients can be long-lasting. There are the skin lesions, the headaches and the fever… But also the psychological consequences that continue long after the disease has disappeared.
In August, Public Health France noted “psychological and relational difficulties” reported through the “Monkeypox info service” line, which uses the English name of the disease. The association that manages this listening service told AFP that 22% of the calls were related to these issues.
The psychological discomfort of patients and ex-patients is linked to several things. Above all, monkeypox is a very painful disease that can leave many physical and aesthetic consequences. But it is also a new disease, which appeared in France at the end of last May, and about which many patients complain that they do not have enough information.
Furthermore, after two years of Covid-19, the three-week isolation imposed on any monkeypox patient is generally badly experienced. A small proportion of patients develop internal lesions, particularly proctological (anorectal region), which are very painful and persist for several weeks after the onset of symptoms.
Excruciating pain and lasting symptoms.
“He had heavy bleeding when he had a bowel movement at first, and the bleeding came back very recently,” says Corentin Hennebert, 27, who was among the first 400 cases reported in France.
His first symptoms appeared on June 21. At this stage, it is mostly body aches, fever, and swollen glands in the groin. Lesions then appeared on the rectal mucosa. “This is where he starts to get hellish,” he tells France 24. The anal injury and pain last ten days, the pimples take almost three weeks to heal. Even today, the symptoms persist. “I had an ulceration on my anus that the hospital attributed to monkeypox and it still hasn’t gone away,” he continues. “So symptoms can range from two weeks to more than two months, obviously.”
I have the much revered monkeypox and am housebound for three weeks. The opportunity for me to do a bit of prevention friends according to what the hospital told me 👇👇
—PINSON (@hennebert8) July 2, 2022
With other patients, Corentin Hennebert created the Monkeypox collective, which lists fifteen demands in the face of “failure of government action”. Among them, the opening of an ALD (Long-Term Condition) by Social Security for patients. “We ask for the opening of the ALD because there is a strong psychological impact and it is also part of the symptoms”, estimates Corentin Hennebert. Symptoms including loss of libido, she adds, saying she “cried [sa] sexuality”.
“When we’ve been through that, it’s calm,” he continues. “I’ve never been in so much pain in my life, it hurts like hell!”
Before he was given tramadol, a powerful painkiller, he “lost 7kg in three days” because he no longer ate. “She only thought about the pain,” she remembers. “And I’m not the only one, others have contacted me to say that they were exhausted, that they were crying all the time.”
This is particularly the case for Aurélien, 40: “The pain was unbearable, I cried,” he confided to France 24. His first symptoms appeared on July 23, when he was vaccinated the day before. Too late, the machine starts up. Tiredness, pain, pimples, but above all cracks in the rectum that cause “unbearable pain”. In two weeks, he lost 8 kg.
The illness lasted just over three weeks, but even today, Aurélien has to deal with persistent rectal fissures. “Psychologically, it’s very hard to bear,” he says, saying he has zero morals. A state for which he also considers not receiving the necessary help.
>> Read – Monkeypox: vaccination certificates “due to lack of arms, not due to lack of doses”
Lack of information and support.
“We do not receive any support from the hospitals to know how things are going, I was left alone, with no help other than morphine,” says Aurélien.
Corentin plus soie. When he was told that he had contracted monkeypox in June, he felt isolated due to the lack of information circulating about the disease. “When you have a new disease, it’s very stressful because you don’t have a baseline,” he says, adding that apart from associations, no information is circulating about monkeypox.
Then it was the vaccination that failed. “I have a friend with HIV, therefore a sensitive and fragile audience, who was in contact after an intimate relationship with a person who later announced to him that he had monkeypox,” says Corentin Hennebert. HIV carrier, his friend is an absolute emergency. However, he “ran to all the hospitals and vaccination centers and they did not give him the dose. Finally, he declared the symptoms and was, too, isolated for three weeks”.
Monkeypox patients have to deal with blurriness during, but also after the illness. “Supposedly we are immune, but we are not even sure of that, we have not had a clear answer from scientists, so I am not calm,” he said.
The fact of saying that the public authorities were not there at the beginning of this epidemic and that today it continues to slip and that we have to go find information, adds to the psychological repercussions”, continues Corentin.
Furthermore, after two years of Covid-19, it is still difficult to live affected by another disease in an epidemic situation that requires greater isolation.
“There is a complete weariness,” says Corentin. “As a patient, doing three weeks of isolation when we have already hit all the confinements and curfews is not joyful.”
Likewise, the general public’s fatigue in the face of epidemics contributes to denigrating the suffering of the patients who are affected. According to Corentin Hennebert, this actually reinforces hate reactions. “It’s stigmatizing because the symptoms can be visible,” she adds, referring to the pimples, blisters and pustules that appear on some patients’ bodies. “If you’re covered in pimples, clearly you don’t leave the house anymore, because that’s pretty impressive.”
The stigmatization of the sick, but even more so that of homosexuals, particularly affected by the epidemic. In its latest update on August 23, Public Health France identified 3,421 cases of monkeypox and specified that if 35 women and 15 children have been infected, the patients are mainly men who have sex with men.
Monkeypox ‘comes to wake up from HIV trauma’
“As soon as a disease is visible, it’s scary because it becomes potentially stigmatizing,” Michel Ohayon, director of 190, a sexual health center, tells AFP, drawing a parallel with Kaposi’s sarcoma (vascular tumor due to a herpes virus) which was “the symptom of AIDS”.
This comparison is often repeated by stakeholders. In fact, if the two diseases “have nothing to do” in terms of severity, monkeypox “reawakens the trauma of HIV”, estimates Nicolas Derche, national director of the community health center of the SOS group, which brings together to 650 medical and social. -social structures.
“In HIV-positive people, this has reactivated very violent things”, whether it is “the fear of a diagnosis” or “reviving a strong stigma”, reports Vincent Leclercq, an Aides activist.
Like HIV, monkeypox currently circulates primarily within the gay community.
“Il already beaucoup d’homophobie ordinaire et cela a vrai impact sur la santé mentale”, témoigne Sébastien Tuller, LGBT activist and jurist, who was afraid to reçu de torrents d’insultes et desobligeantes remarks après avoir contracted la variole du singe, beginning of July.
For Corentin Hennebert, it all started when he began to write a series of tweets aimed at preventing the disease. “It was widely shared, especially by homophobes and I can’t even count the number of hateful and violent comments I receive,” she laments.
“Many don’t say they have or have had monkeypox, for fear of being stigmatized,” reports Sébastien Tuller. “Especially young people, who have not yet come out of the closet” to their family, or people who fear that their sexual orientation will be revealed to their employer for the duration of isolation.
>> To read – Monkeypox revives fears of stigmatization of the gay community
Viral infectious disease, monkeypox can be transmitted by direct contact with lesions on the skin or mucous membranes of a sick person, as well as by droplets (saliva, sneezing, sputtering). Sexual relations -with or without penetration- meet these conditions for contamination, and having several partners increases the risk of exposure to the virus.
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