'Isolated' Monkeypox Patients Forced to Ask Internet for Help

As President Joe Biden declared a public health emergency over the spread of monkeypox and the number of confirmed U.S. cases reached 8,934, people are taking to the internet to share their experiences with the virus, saying they are not receiving appropriate support and information elsewhere.

Monkeypox is a virus with symptoms similar to those seen in the past in smallpox patients, although it is clinically less severe. First discovered in 1958 in colonies of monkeys kept for research, the virus had until recently remained endemic to West and Central Africa.

It is spread by close contact and exposure to an infected person's respiratory droplets, skin lesions or other body fluids. Symptoms include swollen lymph nodes, fever and a rash that can initially be mistaken for chickenpox or a sexually transmitted infection.

Since the World Health Organization (WHO) declared the worldwide outbreak of the virus a "public health emergency of international concern," it has become clear that it is spreading faster among those in the LGBTQI+ community.

A WHO spokesperson told Newsweek that in newly affected countries, the virus continues to be concentrated "among gay, bisexual and other men who have sex with men who have had recent sexual contact with a new partner or partners."

In a response to the outbreak, health officials and the U.S. Centers for Disease Control and Prevention have stressed the importance of vaccination to help curb the spread. But last week it was revealed that despite millions of stockpiles of monkeypox vaccines in the U.S., few are being used.

As public health bodies rush to put out advice about the spreading virus, people have gone online to share their experiences and feelings about the world's response to the outbreak.

Monkeypox and sharing online
The internet has become a place for those with the monkeypox virus to share their symptoms, thoughts and feelings about the virus. Above, a man with monkeypox sores and, in the inset, a phone is used to share information online. Halfpoint/Urupong/Getty Images

On Reddit, users are sharing detailed accounts of their experiences, showcasing difficulties in getting tested, receiving vaccinations and treatment.

Rahul from Luxembourg, 31, was diagnosed with monkeypox on July 29—more than a week after the onset of symptoms. He shared his experience on Reddit, detailing everything from his first symptom to getting treatment.

In what he described as an "excruciating" process, his fever topped at 102, and he visited his doctor and a specialist several times in the seven days before a diagnosis was given.

Rahul told Newsweek: "After more than a week after onset of fever and intense unbearable pain, they both diagnosed it as an injury or bacterial infection and didn't mention monkeypox. When after a week of symptoms getting worse, I saw blisters on my face. I had to insist my doctor give me information about monkeypox testing."

After he was sent to the emergency room in excruciating pain and with an extremely high fever, the hospital agreed he likely had monkeypox and finally tested for the virus.

"The infectious disease specialist was shocked I hadn't been tested for it earlier," Rahul said.

After finally having a test and confirmation that he did have monkeypox, Rahul was prescribed painkillers, which he said only partially helped with his symptoms.

"I had been active on Reddit because nowhere else are we getting the right information around it. Had it not been for the posts of others, I would not have suspected monkeypox myself because none of my doctors mentioned it at all despite the obvious symptoms," he said.

Unsure where else to turn, Rahul started sharing his experience online. "Sharing online has helped me by having a channel to stay sane in these extremely tough times when I was going through intense pain and was isolated alone on top of it," he said.

"I also managed to help a few people who messaged me asking about my experience, discussing possible treatments and workarounds to help with the pain because doctors and health care [have] not been very helpful across the globe," Rahul said.

He isn't the only one to share his experience and thoughts on the recent outbreak on Reddit in the absence of accessible support in the real world. Data shows that there were more than 91,000 mentions of monkeypox on the site between January and July 2022, with an 18 percent increase of month-on-month mentions of monkeypox.

Transparency and support on the online forum have given others worried about the virus a place to share resources. A Reddit spokesperson told Newsweek: "Reddit allows for differentiated conversations because of upvotes and downvotes. Low-quality or false information tends to get downvoted. Also, moderators are empowered to enforce specific rules in their communities on top of our sitewide policies—for example, only peer-reviewed research in r/science."

In a series of posts and replies across the site, others with monkeypox have shared their experiences and frustrations in getting support.

"I'm in this boat," said one commenter. "I've been sick for a week and can't get in to get tested. My doctor was zero help after I saw them and they treated me like a leper."

Another Redditor wrote: "I have never had any suicidal thoughts before until last night when I was crying from the pain caused by monkeypox."

"Sorry you have to experience such pain," wrote a commenter in response to an account of a sufferer's experience. "Sharing your experience will help people understand the severity, so thank you."

A Reddit user from Florida shared the frustration and wrote: "I'm really annoyed at how dismissive everyone was of it being monkeypox. I even told everyone that I'm gay (and sleep with other men) and that I'm sexually active. And the one lady in the ER wouldn't even admit me unless I was in actual pain."