Monkeypox’s toll: Stories of agony, isolation and government incompetence

The virus is rarely deadly and only a few fatalities have been reported in the United States. But TikTok and Instagram are flush with firsthand accounts of agony and loneliness.

The outbreak appears to be slowing, with the weekly case count declining, but experts worry the virus will remain an ever-present threat, especially among sexually active gay men.

Here are the stories of five men who contracted monkeypox, as told to reporter Fenit Nirappil.

Fighting to be tested: Joshua Wright, 31, New York City

I started freaking out after I saw the photos on the CDC website showing monkeypox lesions.

They looked just like the scab on my groin.

I frantically googled, “What is monkeypox?” and “How does monkeypox show up?” The headaches, the fatigue, the night sweats I thought were just exhaustion from Pride weekend — they were all warnings.

But getting a test was a nightmare.

I went to the urgent care clinic CityMD the next morning. The doctor told me they were only testing if you had two or more lesions. But she suspected it was monkeypox, took a swab anyway and told me she would follow up. She didn’t.

So I called the city’s department of health. They said go to an ER. And the one at Mount Sinai told me it was probably an ingrown hair, that they barely had any tests and couldn’t waste any.

I spent the Fourth of July weekend uneasy. One doctor thought it was monkeypox. Three didn’t.

Then on July 4, more pimplelike spots popped up around my body. Finally, the doctors at the ER agreed to test me.

The doctor who was leading the ER told me it was like the early days of covid all over again: Tests are hard to come by. People aren’t getting tested. We aren’t containing this.

The next day, I found out I was positive.

I ended up getting a $5,500 bill for both emergency room visits. Luckily I met my deductible, and my insurance covered most of it.

But it made me wonder: What’s the incentive for getting a test? It can be expensive. If you’re positive, you have to isolate for up to four weeks, maybe longer. I missed a booze cruise and seeing Hadestown on Broadway with the summer associates at my law firm. I had to skip two weeks in Fire Island with friends.

And I had to fight to even get a test.

Should I still be worried about monkeypox?

Struggling to treat lesions: Brian Thomas, 33, Baltimore

I could put the pieces together. What looked like two ingrown hairs on my butt were getting worse, and I felt like I had the flu. I already saw another health creator on TikTok talk about getting monkeypox.

Fortunately, my primary care doctor is an infectious diseases specialist at Johns Hopkins because I’m a person living with HIV. And I’m a travel nurse, so I know how to advocate for myself.

After I sent pictures of my lesions, I went to the back entrance of the clinic where Johns Hopkins staff in paper gowns and goggles ushered me inside, away from the lobby, to get tested. I got results back within 24 hours.

But even the great doctors at one of the best infectious diseases hospitals had no idea what to do with me now that I was positive. They had no suggestions other than keep the lesions covered, don’t itch them and isolate from others.

It was excruciating going to the bathroom. It felt like I had a vise on my colon for seven days. Imagine feeling like you have to go constantly but you can’t go.

Because I’m a nurse, I knew I could relieve the cramps with Ibuprofen, Tylenol and a heating pad.

I didn’t know anyone else going through monkeypox so I documented my experiences on Instagram and TikTok. One after another, guys were messaging me telling me about their butt lesions and having no idea what to do.

All I could do is tell them what helped me. Because we sure as hell weren’t getting guidance.

Monkeypox cases are down, but concern over intradermal vaccine lingers

Getting antivirals by luck: Gerald Febles, 25, New York City

By the time the city told me I had monkeypox, it was already too late. Lesions had spread all over my body, and I found help on my own.

It was my co-worker who told me Lenox Hill emergency room was doing testing.

I started posting TikToks about my experience because I had a hard time finding resources and wanted to help others.

Locals reporters interviewed me after seeing my TikToks. A man who saw a segment on the local NBC station reached out to me and told me his doctor might be running a trial at Columbia University testing an antiviral drug for monkeypox.

He connected me to his doctor and literally that same day, I got the TPoxx pills.

24 hours later, the pain and itching subsided.

Within three days, the lesions stopped growing.

By Day 5, they started to crust over.

And they were gone within a week and a half.

I was going back to Columbia University every week to do blood and urine tests until I got cleared.

But the most frustrating part of this whole ordeal is I waited 10 days for my test results. I was already in treatment by the time they arrived. No one from the city called and told me I could get pills.

How do you excuse that? When I had covid in 2020, they kept calling me to make sure I was staying home and offered free meals and help paying rent.

Now you have a new virus primarily affecting homosexual and bisexual men, and there’s no time and resources for us?

Inside a city’s struggle to vaccinate gay Black men for monkeypox

Forced apart from daughters: Kayden Coleman, 36, Houston

I somehow dodged covid all these years. But I thought, watch monkeypox be the thing that gets me.

I only have custody of my 8-year-old daughter, Azaelia, during the summer, when I have to cram in a year’s worth of in-person parenting time.

She gets to play with her 2-year-old sister, Jurnee, who lives with me. We were going to go to amusement parks and have spa days. I’ve chronicled my parenthood journey on social media since I went public with my story of giving birth as a transgender man.

My fears came true when I noticed bumps and swollen lymph nodes near my groin. I tested positive on August 7.

I asked the person who called from the doctor’s office what I should do to protect my daughters, and she literally had no answers. Like none. The health department couldn’t really tell me what to do either.

I don’t get it. Why isn’t there more urgency to protect kids? Everything I read says symptoms are worse for them. As kids, they weren’t eligible for vaccines either.

I dropped off Jurnee to stay with her other dad who lives just five minutes away. But I had to avoid sitting on the same couch as Azaelia, or even being in the same room. I walked around spraying a bottle of Lysol everywhere.

I told her I had monkeypox, and she probably saw my TikToks about it because she’s always on TikTok. But kids don’t really understand, you know?

I had to get really stern because she kept forgetting. There were times I said, “Listen, you have to stay out of my room.”

I told her to keep checking her body for any bumps. Once she took a nap in the middle of the day and told me she was tired, and internally, I’m freaking out. But I can’t tell her.

The scabs finally fell off, and a fresh layer of skin healed over them two weeks after I tested positive. That’s when I could stop isolating. The first thing Azaelia asked for was a hug.

We missed out on Six Flags and the private hip-hop dance lessons I had arranged for her.

But at least I got to take her to Urban Air to jump on trampolines with her sister, and we got manis before I took her back to her other dad’s place in New Jersey.

Struggle to protect gay, bisexual men from monkeypox exposes inequities

Economic toll of monkeypox: Andrew Thomas, 30, Los Angeles

America being how it is, I had to decide whether it was financially worth it to go to a hospital when I woke up in the middle of the night with a 105-degree fever, and a pain in my rear end so intense I couldn’t sit upright.

Taking an ambulance was absolutely out of the question. So I just drove myself at 4 a.m. and tried to lean over to the side.

I have insurance, but co-pays and medications not covered left with me with almost $2,000 in out-of-pocket expenses. I was the one who had to educate doctors about monkeypox even though California declared monkeypox an emergency.

I ran out of paid time off at my film post-production job because I was exposed to covid so many times and had to isolate. I asked if I could work from home, but my bosses wouldn’t let me. Nor would they provide other accommodations or give me any more paid leave. While I was out, they stopped chipping in the $300 they had been giving me every month for my insurance. It’s a small office, and I didn’t feel comfortable going back and having co-workers ask why I’m screaming on the toilet or why I was gone.

I asked the nurse from the county health department if the county could offer any financial assistance. Nope.

And we’re expected to stay home for weeks?

I don’t consider myself poor; I make decent money. But I’m trying to pay off credit card debt, and the interest rates are going up. Everything is more expensive.

I qualified for temporary disability to get $690 a week. But in a city like Los Angeles, that’s not enough.

I can barely pay rent. I haven’t been able to give my parents any money, and my father has Alzheimer’s.

My lesions are healed, but now I’m seeing a colorectal surgeon to deal with the damage left by monkeypox. I worry that my health insurance is going to say that’s not medically necessary. There’s a lot of pressure in the gay community to be attractive, and this virus has left me more self-conscious.

I just can’t believe all these guys on TikTok who are saying, “Oh, monkeypox is not that big of a deal because it won’t kill you.” This pain is agonizing; I passed out twice.

Yeah, you might not die from it. But your life can be ruined unless you’re rich.