The physical manifestations of monkeypox are well known, but beyond skin lesions, fatigue and bouts of fever, sufferers and those who have recovered report various psychological repercussions related to pain, lack of information and support, but also to a certain stigma, even to discrimination.
While WHO noted “encouraging” signs in the evolution of the monkeypox epidemic in Europe on Tuesday, August 30, the associations point out that the sequelae for patients can be long-lasting. There are skin lesions, headaches and fever … But also the psychological consequences that continue long after the disease has disappeared.
In August, Public Health France found “psychological and relationship 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 concerned these issues.
The psychological distress of patients and former patients is related 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 that they do not have enough information.
Furthermore, after two years of Covid-19, the three-week isolation imposed on any monkeypox patient has generally lived poorly. A small percentage 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 the beginning and a bleeding that recurred very recently,” says Corentin Hennebert, 27, who was among the top 400 reported cases in France.
His first symptoms appeared on June 21st. At this stage, it is mainly muscle aches, fever and swollen glands in the groin. Lesions then appeared in the rectal mucosa. “This is where it starts to get hell,” she tells France 24. The anal injury and pain last for ten days, pimples take nearly three weeks to heal. Even today, the symptoms persist. “I had an ulceration in the anus that the hospital attributed to Monkeypox and it still hasn’t gone away,” she continues. “So the symptoms can range from two weeks to over two months, of course.”
I have the much revered monkeypox and am locked up in the house for three weeks. The opportunity for me to do some 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 claims in the face of “government failure.” Among them, the opening of a Social Security Long Term Affection (ALD) for the sick. “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 include loss of libido, she adds, saying that she “cried [sa] sexuality”.
“When we’ve been through all of this, he’s calm,” he continues. “I’ve never had so much pain in my life, it hurts like hell!”
Before being given tramadol, a powerful pain reliever, he “lost 7 kg in three days” because he no longer ate. “I was just thinking about the pain,” he recalls. “And I’m not the only one, others contacted me to tell me they were exhausted, crying all the time.”
This is the case in particular of 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 car is started. He tired, aches, pimples, but above all cracks in the rectum that cause him “excruciating pain”. In two weeks he lost 8 kg.
The disease lasted a little over three weeks, but still today Aurélien has to deal with persistent rectal fissures. “Psychologically, it’s very hard to take,” he says, saying he has zero morale. A state for which he also believes that he is not receiving the necessary help.
>> To read – Monkeypox: vaccination coupons “for lack of weapons, not for lack of doses”
Lack of information and support
“We don’t get any support from hospitals to know how things are going, I’m left alone, with no help except morphine,” says Aurélien.
Corentin plussoie. When told he had contracted monkeypox in June, he felt isolated due to a lack of information about the disease. “When you have a new disease, it’s very stressful because you don’t have a baseline,” he says, adding that aside from associations, no information is circulating on monkeypox.
Then it was the vaccination that slipped. “I have a friend with HIV – therefore a sensitive and fragile audience – who has been in contact after an intimate relationship with a person who later told him he has monkeypox,” says Corentin Hennebert. Carrier of HIV, his friend is an absolute emergency. However, “he ran to all the hospitals and vaccination centers and didn’t take a dose. He eventually declared symptoms and was also isolated for three weeks.”
Patients with monkeypox face blurring during, but also after illness. “Presumably we’re immune, but we’re not even sure, we haven’t had a clear answer from the scientists, so I’m not reassured,” she said.
The fact of saying that the public authorities were not there at the beginning of this epidemic and that today it is still slipping and that we have to go fishing for information, adds to the psychological repercussions “, continues Corentin.
Furthermore, after two years of Covid-19, it remains difficult to live with another disease in an epidemic situation that requires further isolation.
“We are completely fed up,” says Corentin. “As a patient, doing three weeks of solitary confinement when we have already reached all the borders and the curfew is not a joy.”
Furthermore, the weariness of the general public in the face of epidemics contributes to denigrate the suffering of the patients who are affected by them. According to Corentin Hennebert, this actually reinforces hate reactions. “It’s stigmatizing because the symptoms may be visible,” she adds, referring to pimples, blisters and pustules that appear on some patients’ bodies. “If you’re covered in pimples, you clearly don’t leave the house anymore, because it’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 specifies that if 35 women and 15 children have been infected, the patients are mainly men who have sex with men.
Monkeypox “awakens from HIV trauma”
“As soon as a disease is visible, it is scary because it becomes potentially stigmatizing,” notes to AFP Michel Ohayon, director of 190, a sexual health center, drawing a parallel with Kaposi’s sarcoma (vascular tumor due to a virus of the herpes) which was “the symptom of AIDS”.
This comparison is often repeated by interested parties. Indeed, if the two diseases “have nothing to do” in terms of severity, monkeypox “awakens the trauma of HIV”, estimates Nicolas Derche, national director of the community health center of the SOS group, which brings together 650 people including social workers and doctors – 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, an Aides activist.
As in the case of HIV, monkeypox currently circulates mainly within the gay community.
“There is a lot of ordinary homophobia and this has a real impact on mental health,” testifies Sébastien Tuller, an LGBT activist and lawyer, who says he received torrents of insults and derogatory comments after contracting monkeypox at the beginning of July.
For Corentin Hennebert it all started when he started writing a series of tweets aimed at preventing the disease. “It has been widely circulated, especially by homophobes and I can’t even count the number of hateful and violent comments I get,” she complains.
“Many do not say they have monkeypox or have had it, for fear of being stigmatized,” says Sébastien Tuller. “Especially young people, who have not yet come out” to their family, or people who fear that their sexual orientation will be revealed to their employer due to the length of isolation.
>> Read – Monkeypox revives gay community fears of stigma
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, fulfills these conditions of contamination and having multiple partners increases the risk of being exposed to the virus.