Mpox: A Patient’s Perspective

DURING THE HEIGHT of last year’s monkeypox (mpox) outbreak, New York resident Jeffrey Galaise, 42, had been navigating the city’s overrun online appointment system desperate to get vaccinated. “I finally got an appointment in June, but had to cancel after contracting COVID,” he said. Jeffrey did eventually get the mpox vaccine, but the timing could not have been worse: He was just beginning to feel ill. As his symptoms escalated, he experienced fatigue, achiness, low-grade fever, swollen glands, a headache and an overall dizzy, lethargic feeling, but he did not have any of the telltale pox blisters.

“Initially I went to my local urgent care, that has always been very helpful, and they confirmed that they couldn’t test me for mpox without any lesions, which I didn’t have at the time,” he said. They were able to test him for everything else, and he tested negative for COVID-19, influenza and strep. After several more days, Jeffrey’s fever spiked and he noticed several lesions on his body. That’s when he went back to his primary care physician (PCP) and obtained an official diagnosis of mpox. From there, the real health challenges began.

“My [PCP] told me that based on the what he saw in the lesions, my case was going to be severe, and he wanted me to get into the clinical trial for TPOXX, an antiviral previously used for smallpox that was in the process of FDA approval for mpox,” explained Jeffrey. “At the time, only certain hospitals and doctors were able to administer it.”

Jeffrey’s PCP contacted a colleague at New York University Langone who admitted Jeffrey into the trial, but by the time they were able to get him the needed medication, his symptoms had worsened significantly. “By the time I was able to get TPOXX, I had at least 65 lesions all over my body and severe pain,” explained Jeffrey. “If I had gotten the medication on the day I saw my doctor, I don’t know how [the disease] would have progressed, but I would assume it would not have been as aggressive or severe.”

From Victim to Advocate

The stigma associated with mpox (it is perceived by many as a sexually transmitted disease due to primarily spreading through sexual contact during the 2022 outbreak¹) coupled with the unsightly appearance of the disease symptoms meant Jeffrey was left to primarily fight the virus in isolation. Determined to empower himself and help others, Jeffrey decided to go public about his experience via social media. “I felt like nobody had answers, and I needed people to talk to,” he said. “I began posting online about my symptoms and looking for support groups, but I couldn’t find anything. So I decided to start a Zoom support group of my own.”

As word got out about the support group, more and more people began contacting Jeffrey. Gay men from all over the country logged on to his hour-long Zoom sessions to share their struggles and resources. “Because I was posting on Instagram, people were coming to me for information because they said their doctors just turned them away,” he said. “They would go from one doctor to another doctor to another doctor. I’m not a therapist and I’m not a doctor, but it helped to talk to other people going through similar experiences and share coping strategies.”

Jeffrey remained ill with mpox for nearly a month, and he says once he was diagnosed, there was limited information about how to best treat the symptoms. And, health experts acknowledge that the stigma associated with mpox, particularly within the LGBTQ community, means the pain and anguish do not always go away when the scabs heal. “I think it’s important to be aware of the effect of the stigma regarding the route of mpox transmission, at-risk groups and disfiguring skin lesions — all of which could contribute to psychological distress,” said James Badenoch, MBChB, academic foundation doctor at the Queen Mary University of Medicine in London and the co-lead author of a 2022 review and meta-analysis published in eClinical Medicine exploring neurological and psychiatric conditions linked to mpox.²

During a news conference on the topic last year, Hans Kluge, MD, regional director of the World Health Organization in Europe, concurred, saying “The anguish experienced by many patients cannot be underestimated. It can be a truly horrible time.” Dr. Kluge called for buttressing “both the physical and mental health of patients during the entire course of the disease and after. It remains of critical importance.”²

Today, Jeffrey has recovered physically, and thankfully, only suffered minimal scarring from the unsightly lesions. But he says he still has persistent nightmares about the infection. “It’s a very traumatic experience. I’m a different person having been through this,” he says. “If you haven’t lived through it, you have no idea the kind of pain that this is, and the red tape that’s attached to trying to get help and support.”