The physical manifestations of monkeypox are well known, but beyond skin lesions, fatigue and bouts of fever, patients and those who have recovered report varied psychological repercussions related to pain, lack of information and support, but also to a certain stigma, even discrimination.
While the WHO noted, Tuesday, August 30, “encouraging” signs in the evolution of the monkeypox epidemic in Europe, associations point out that the sequelae for patients can be long-lasting. There are skin lesions, headaches and fever… But also the psychological consequences which continue long after the disease has disappeared.
In August, Public Health France noted “psychological and relational difficulties” reported via 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 calls related to these themes.
The psychological distress of patients and former patients is linked to several things. Above all, monkeypox is a very painful disease that can leave many physical and aesthetic sequelae. But it is also a new disease, which appeared in France at the end of last May, and for which many patients complain of not having enough information.
In addition, after two years of Covid-19, the three-week isolation imposed on any patient with monkeypox is generally badly experienced. A small proportion of patients develop internal lesions, particularly proctologic (anorectal region), which are very painful and persist for several weeks after the onset of symptoms.
Unbearable pain and lasting symptoms
“I had heavy bleeding when I had a bowel movement at first, and bleeding that 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 above all body aches, fever and swollen glands in the groin. Lesions then appeared in the rectal mucosa. “This is where it starts to be hellish”, he tells France 24. The anal lesion and the pain last ten days, the pimples take almost three weeks to heal. Even today, symptoms persist. “I had an ulceration in my anus which the hospital attributed to Monkeypox and which still hasn’t gone away,” he continues. “So the symptoms can vary from two weeks to more than two months, obviously.”
I have the much revered monkey pox and I’m locked up at home for three weeks. The opportunity for me to do a little 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 the “failure of government action”. Among them, the opening of an ALD (Long Term Affection) by Social Security for the sick. “We are asking 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, he adds, saying he “mourned [sa] sexuality”.
“When we’ve been through that, it’s calm,” he continues. “I’ve never had so much pain in my life, it hurts like hell!”
Before being placed on tramadol, a powerful painkiller, he “lost 7 kg over three days” because he was no longer eating. “I only thought about the pain,” he recalls. “And I’m not the only one, others have contacted me to tell me that they were exhausted, that they were crying all the time”.
This is particularly the case of Aurélien, 40 years old: “The pain was unbearable, I cried about it”, he confided to France 24. His first symptoms appeared on July 23, when he was is vaccinated the day before. Too late, the machine is launched. Fatigue, aches, pimples, but above all cracks in the rectum which cause him “excruciating pain”. In two weeks, he lost 8 kg.
The illness lasted a little over three weeks, but still today, Aurélien has to deal with persistent rectal fissures. “Psychologically, it’s very hard to bear,” he says, saying he has zero morale. A state for which he considers, in addition, not to receive the necessary help.
>> To read – Monkey pox: vaccination slips “for lack of arms, not for lack of doses”
Lack of information and support
“We don’t receive any support from hospitals to find out how things are going, I was left on my own, without any help except morphine”, says Aurélien.
Corentin plussoie. When he was told 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 on monkeypox.
Then it was vaccination that slipped. “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 did not get a dose. Finally, he declared the symptoms and was, too, isolated for three weeks”.
Patients with monkeypox have to deal with blurring during, but also after the illness. “We are supposedly immune but we are not even sure of that, we have not had a clear answer from the scientists, so I am not reassured,” he said.
The fact of saying that the public authorities were not there at the start of this epidemic and that today it is still slipping and that we have to go fishing for information, it adds to the psychological repercussions ” , continues Corentin.
In addition, after two years of Covid-19, being affected by another disease in an epidemic situation requiring further isolation remains difficult to live with.
“There is a complete fed up,” says Corentin. “As a patient, doing three weeks of isolation when we have already hit all the confinements and curfews is not joyful”.
Also, the weariness of the general public in the face of epidemics contributes to denigrating the suffering of patients who are affected. According to Corentin Hennebert, this indeed reinforces the reactions of hatred. “It’s stigmatizing because the symptoms can be visible,” he adds, referring to the pimples, blisters and pustules appearing on the body of some patients. “If you’re covered in pimples, you clearly don’t leave the house anymore, because that’s pretty impressive.”
Stigmatization of the sick, but even more so, that of homosexuals, particularly affected by the epidemic. In its latest update dated August 23, Public Health France identified 3,421 cases of monkeypox, and specifies that if 35 women and 15 children have been infected, the patients are mainly men who have sex with men. .
Monkey pox ‘comes to wake up from HIV trauma’
“As soon as a disease is visible, it is scary because it becomes potentially stigmatizing”, observes to AFP, Michel Ohayon, director of 190, a sexual health center, 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 those concerned. Indeed, if the two diseases “have nothing to do” in terms of severity, monkey pox “comes to awaken HIV trauma”, estimates Nicolas Derche, national director of the community health center of the SOS group, which brings together 650 social and medico-social structures.
“In HIV-positive people, this has reactivated very violent things”, whether it is “the fear of a diagnosis” or “reliving a strong stigma”, reports Vincent Leclercq, activist at Aides.
As was the case with HIV, monkeypox currently circulates primarily within the gay community.
“There is a lot of ordinary homophobia and this has a real impact on mental health”, testifies Sébastien Tuller, LGBT activist and lawyer, who says he received torrents of insults and derogatory remarks after contracting monkeypox , beginning of July.
For Corentin Hennebert, it all started when he got down to writing a series of tweets aimed at preventing the disease. “It was widely relayed, especially by homophobes and I can’t even count the number of hateful and violent comments I receive,” he laments.
“Many do not say that they have monkeypox or that they have had it, for fear of being stigmatized”, reports Sébastien Tuller. “Young people especially, who have not yet come out” to their family, or people who are afraid of having their sexual orientation revealed to their employer because of the duration of the isolation.
>> To read – Monkey pox revives fears of stigmatization of the gay community
Viral infectious disease, monkeypox can be transmitted by direct contact with skin lesions or mucous membranes of a sick person, as well as by droplets (saliva, sneezing, sputter). Sexual intercourse – with or without penetration – meets these conditions for contamination, and having several partners increases the risk of being exposed to the virus.