SMore than 22,000 monkeypox cases were confirmed worldwide since the outbreak in May 2022. Over 5,000 cases of monkeypox have been reported in the United States, many in areas such as New York City and California. This virus can cause a blister-like skin rash that spreads easily through contact and has so far only affected men who have had sex with other men.
Although cases of monkeypox are on the rise, many people still have difficulty finding information regarding testing, treatment, or vaccines. People who are concerned about their health or are infected may need to search for answers themselves.
TIME spoke to three people who had monkeypox. It was a mentally and physically difficult condition that left them with confusion, stigma and extreme pain. “It was terrifying,” said Matthew Cancel, a publicist in New York City. “I really was in it alone.” Each shared their story in hopes of helping others.
Luke Brown (age 29)
New York City: Project Manager at Technology Company
Brown has become an activist after surviving monkeypox. He now works to alleviate the pain and suffering caused by the disease. He first experienced it all.
The gay community of New York is a very healthy group. We’re always tracking the health news, and in May we heard that there had been a meningitis outbreak in the gay community in Florida and decided we should all go get our meningitis boosters, which we did. Then we heard that there’s this weird monkeypox thing happening in Europe, and we looked into getting a smallpox vaccine [which also helps prevent monkeypox], but you can’t really get it unless you’re in the military or you’re going to do some sort of risky travel.
After July’s eligibility was available, friends and me began to try to obtain a vaccine appointment via the unreliable New York City Department of Health website. Finally I got a text from a friend saying “Here’s a link where doses are available right now.” Frantically I tapped through the complicated website from my phone and was relieved to snatch up a vaccine at last, on July 9.
Meantime, all of my friends and I were saying, “Hey guys, I know the vaccine is super scarce, but one thing we can all be doing is twice daily skin scans. It’s free and you can do it at home, and the worst thing that’s going to happen is that you’re going to find a mole that you should have a doctor look at.” So on July 10—just 26 hours after my vaccine—I did a skin scan and noticed my first lesion. By the next morning, I was in my doctor’s office and had them sample the lesion. Two days passed before I received the results. During that time, I also developed other symptoms like fever, body aches and chills. The monkeypox test result was positive on July 14th, just a few days after I had waited. And then, boom, right after that, I had a second burst of lesions—like stars in the sky—all over my body.
For the next few days, I was in excruciating pain—the worst pain of my life. I’ve been in a car wreck. I’ve had sinus surgery four times. I’ve had wisdom teeth out. I’ve had COVID-19 and mono. I’ve broken my hand, and the pain was nothing like this. I was put on Gabapentin by doctors. [a medication used to treat pain from shingles]I also took ibuprofen as well as acetaminophen. However, nothing was able to stop the pain.
Through this time, I tried to obtain TPOXX. I talked to my doctor and he couldn’t prescribe it, because at the time, primary care providers were required to submit a request to the local Department of Health for approval to prescribe the drug, and the DOH in turn would approve or deny the request. [Note: TPOXX is considered an investigational new drug, which requires multiple forms, patient samples, and even photos of lesions before it could be prescribed. As of July 22, the U.S. Centers for Disease Control and Prevention (CDC) has made it easier for clinicians to prescribe TPOXX, removing some of these hurdles.]
As a last resort, I uploaded a story on Instagram asking for help to access TPOXX. If there’s one thing gay men don’t get enough credit for, it’s looking out for each other, and I got a text from a friend saying, “Hey, I’ve got a friend who knows a doctor who might be prescribing this stuff.” Two hours later, I got a call from the doctor’s office, an infectious disease specialist. The doctor scheduled me to visit him via video the following day. I also had my TPOXXx shipped directly to my home that same day.
Now I’m very much on the mend. The CDC says you have to wait until all lesions have fully healed and new skin has grown before you’re not contagious. So I mostly don’t go into public places—and when I do, I’m masked and don’t touch anything.
In the meantime, I’ve been spending time putting together a Google doc to share with other people trying to navigate the TPOXX labyrinth, explaining what that drug does, what it doesn’t do, and how you get it. I feel like going back in time and helping myself—helping the people who don’t have these answers. To be the resource I wish I had.
—As told to Jeffrey Kluger
Matthew Cancel (age 27)
Publicist; New York City
After learning in June that monkeypox was spreading in New York City, particularly among men who have sex with men, Cancel (who identifies as gay) called his doctors, the city’s health department, and local urgent-care clinics and emergency rooms in search of a vaccine. He was not able to find out how and if he would be vaccinated. Cancel then began to experience symptoms in July.
While I was on vacation, I returned feeling unwell. I was feeling ill. My lymph nodes had become swollen and I also felt like I was having a fever and a headache. I thought, “Maybe it’s a cold. Maybe I’m exhausted. Maybe I’ve been traveling too much. Maybe it’s COVID.” But I was also like, “Let me call about that monkeypox vaccine again.” Not only did I hit dead ends, I had people hang up on me. It was also difficult to locate testing.
My skin began to develop bumps. I FaceTimed my primary care physician, who said they were bug bites and I shouldn’t worry. Some of my sores started blistering the next morning when I woke awake. I noticed that there were many more. Itchy and painful they were growing larger. I was like, ‘“Okay, this is monkeypox.” I don’t know exactly where I caught it, but I’d been at Pride events in close proximity to a lot of people.
I called my PCP’s office again and connected with a nurse practitioner. While she was very kind and caring, I was also aware that she did not know how to do it and had never received guidance on monkeypox. It was scary. While the nurse practitioner was calling, I texted my friend who is a doctor in public health. His advice was to get started on antivirals immediately. The nurse practitioner didn’t prescribe tecovirimat [known as TPOXX], an antiviral that can be used to treat monkeypox, because it’s only available through the Strategic National Stockpile. She said, “It’s going to be a really crazy process to get it, and I want to get you on antivirals today,” so she ended up prescribing an antiviral called acyclovir that’s used for herpes viruses. [Note: The CDC does not include acyclovir in its monkeypox treatment recommendations for health care professionals. Some research suggests acyclovir is not effective against poxviruses, though Cancel says it seemed to help relieve his symptoms.]
But I wanted to see a doctor so I visited an urgent care center. They told me I was suffering from monkeypox and that I should go home. They told me there was no physician who could treat my condition. It was really me who was stuck. I hope my PCP contacted the health department so my case was counted, but I’ve kind of given up on calling people, so I didn’t try to report it myself. I did it myself.
After doing some research on the internet, I’ve been running a bath every single day with Epsom salts, table salt, and baking soda and sitting in it for 30 minutes. The itching and pain are greatly relieved and the skin starts to heal.
After being sick for a while, I knew I had to take action. I knew I couldn’t be the only one suffering in silence and very confused about what’s going on. My entire story was posted to Instagram. First, it was just an influx of support; then, it was people saying, “I had no idea this was happening.” I had people who are currently infected saying, “I have been suffering alone.” Then I had people messaging me, asking if they could send me pictures of their sores because they couldn’t get a diagnosis.
It was shocking. I’m a publicist! Communication was my major! My profession is not in the field of health care. That’s when I realized this is a huge, huge problem. Men who have sex with men have been mostly affected so far, but gay and straight people don’t live in silos. If we don’t get this contained, it’s going to get even worse.
—As told to Jamie Ducharme
Matt Ford, age 30
New York, Los Angeles: Actor, writer, video producer
Ford spoke first about his monkeypox story in an interview. TikTok VideoSince then, it has received more than 1,000,000 views.
Online reports of monkeypox had been reported in May and June. I was aware that there were outbreaks in Britain and that they could spread to the U.S. But I didn’t take it seriously as anything that would immediately affect me. I felt like there was something out there that could be of concern to me at some time. That quickly changed.
On June 17, I got a call from someone I’d been hanging out with the weekend prior, who I had prolonged skin-to-skin contact with. I was told that monkeypox is 99 percent certain by him. He was waiting on the confirmed results, but wanted to let me know because I’d been exposed. I was shocked and worried—and immediately felt like I needed to do a bunch of research on it. Super bummed because, based on one Google search, I learned that recovery required isolating for at least two to four weeks. This was a major problem since I had plans to attend New York Pride as well as Fourth of July. It wiped out my plans for three weeks in a matter of seconds.
Because they were conducting contact-tracing, I immediately got in touch with Los Angeles County Department of Public Health. Three days passed before I was able to see my doctor via videochat. Because I suspected I was, I went into isolation. When I was tested I found that I had lesioned my skin and had some on my face. It was confirmed that the test result came back positive after they had swabbed 2 different places.
My lesions looked exactly like the CDC images for that particular outbreak. I also quickly developed flu-like symptoms: a fever, sore throat, cough, and full-body chills—I was sweating through my sheets at night. It was horrible.
My flu-like symptoms subsided, but more lesions began to form all over me, even after the infection had abated. There were more than 25 of them, some on my legs and arms; several on my scalp and my head; and one in my underwear. The majority of itchy lesions are irritating. However, they were extremely painful in the areas that were more sensitive. Epsom salt baths helped a lot. It was constant pain, and for a few nights, I wasn’t able to sleep at all. After two nights of pain, I returned to my doctor. He prescribed Tramadol as a painkiller. However, even this was not enough. I wasn’t aware that there were antivirals available at the time and couldn’t get them. I was merely managing my symptoms.
It was quite difficult to cope with the isolation and physical pain. Around two weeks in—the Fourth of July—it got tough. All my friends had gone out enjoying the holiday and I started to get stir crazy in my bedroom. Many of my friends and acquaintances sent me lovely messages, wishing me quick recovery. When you’re going through this, you’re going through a lot of shit—it’s a dark mental period. So to get a care package, or flowers, or some sweet token from a friend—it really did mean a lot.
Now, more than a month after I was diagnosed, I’m basically back to baseline. There are some residual mental and physical effects. Even though the lesions are gone and I’m not contagious anymore, my body experienced trauma. There are mental-health effects that I’m seeing and discussing with other people who have also gone through it—it’s kind of jarring to reenter society and group settings. At first, I felt a lot of anxiety and awkwardness in social situations.
From talking with doctors, I’m assuming that I have some level of immunity, at least for a little while. I hope it’s for life, but no one really knows. Regardless, I’m going to give it a couple of months, and then once there are plenty of vaccines to go around and supply isn’t an issue, I will definitely get vaccinated.
There’s this shame and stigma that come with monkeypox, and I want to emphasize that there is no reason for that. We’re seeing that it’s primarily affecting queer men, and unfortunately that’s happening at a time when the right wing is already attacking queer people, specifically gay men and trans people. But I want to reiterate to people who get it that they’ve done nothing wrong—it’s just the way the cards have fallen. And remember that it’s temporary: eventually, you’ll be on the other side.
—As told to Angela Haupt
Here are more must-read stories from TIME