Mpox Stories: “A Cruel Coincidence”

Content warning: These are unfiltered accounts of people's personal experiences and there are graphic descriptions of symptoms of physical and mental experiences with monkeypox (mpox) that may be disturbing to read.

Photo_Gregory_F.jpgGregory F

When I first heard about mpox online, I rolled my eyes and thought to myself, “Great! Another thing to be freaked out about.”

I already had a lot on my plate, having just recovered from my first bout of COVID only a few months earlier, and I was preparing for a move across the country. I’d been in BC for six years and was excited to move back to Montreal. I didn’t want to be worried about a new virus. After a few weeks and learning about how mpox was hitting the queer community directly, specifically Montreal, I decided maybe it would be wise to get the vaccine.

I approached both my pharmacist and doctor in BC, and both were absolutely in the dark about the situation. Neither knew where I could get a vaccine. So, I decided to wait and get it in Montreal. When I arrived, I got caught up in seeing old friends and acclimatizing myself once again to the city. It took me almost two weeks to finally go get the vaccine, still thinking myself proactive. But unknowingly, I had already been exposed to the virus a week earlier.

I had noticed a couple of spots on my left hand at one point but assumed they were just bug bites from sleeping with the windows open. I was vaccinated on July 19th and the next day felt like absolute crap, with headaches, body aches, and an insanely sore arm, I was stuck on the couch for three days thinking it was just the effects of the vaccine. But by the 22nd I started to have pain in my rectum and hoped it was just hemorrhoids, but it quickly turned into something far more painful as a rash spread and I had a nearly impossible time using the bathroom.

All the other symptoms disappeared rather quickly but in their place I saw a whole new set of lesions pop up seemingly overnight. Red spots appeared down both my legs, on the top of my feet, on the sole of my left foot, two on either palm of my hand, one on my left ear, and a sprinkling of them across my back and buttocks. It was undeniable I had mpox and immediately started my isolation.

I was confused. The timeline was fuzzy and having had the vaccine just days before my symptoms started it seemed like a cruel coincidence.

I was incredibly disappointed because I’d been planning a big road trip to the east coast with my closest gay friends to visit our families. I had to cancel and stayed here while they went ahead without me. Suddenly, the three people I relied on the most were out of town and I was home alone with a strange disease. I had also just arrived in the city, it was summer and Pride was just around the corner and I knew I’d be isolated and lonely for the foreseeable future. I’m also a self-employed artist and bodyworker, and I give massage and reiki for a living, so suddenly I was without a revenue stream.

By this time, going to the washroom was nearly impossible and so painful I was in agony on the toilet. I started to feel scared and nervous about what I should do. Should I go to the hospital? Get tested? I was clueless about what protocol existed because there was hardly any information available. I was afraid to actually go get tested because I didn't want to experience stigmatization and blame from the health care system that I’d heard others had experienced and I was also just afraid to leave my home and take the metro and possibly expose others. It would have been nice to have more health professionals to speak to who weren’t judgmental and knew about what was happening with my body. In the end, I decided to just care for myself.

I started researching everything I could about the virus and eventually came across, a website written by a fellow queer person living in Toronto named Len (CBRC’s Advancement and Evaluation Director). I felt seen and connected and had a bit more access to information that reassured me I wasn’t alone. I reached out to them to ask about the kits they were offering, which they put together to help folks with mpox care for their lesions. Len happened to be in Montreal and had just recovered from mpox themselves and came to my home and taught me how to use the kit and how to care for my lesions. It was a tender queer moment that I’ll cherish.

I was inspired to share my experience online with daily Instagram live videos so I could help put a face to the disease. It was incredibly comforting to be vulnerable and open about what I was going through. I made a with links to donate through PayPal if folks felt moved to do so. I also made myself an Amazon Wishlist so people could send me supplies like bath salts, food, supplements, tea and other helpful things. I was so surprised by the outpouring of support and love and instantly felt comforted.

Other people with mpox reached out to me and some of the stories I was told were harrowing and far worse than mine. I consider myself lucky that my lesions were not as deep and painful as others. I’m not sure if that’s because I had the vaccine shortly after I was exposed. Like a lot of questions I had during this time, there are still few answers. There is no data right now, so no concrete answers to seemingly simple questions. I hope that will change over time.

The days in isolation were strange and long. It was hot out, it was summer, it was just Gay Pride, and I was isolated and felt cut off from my community and, frankly, humanity in general. I struggled to stay off social media, knowing my ability to feel sorry for myself can be especially strong when I’m alone and doom scrolling. Watching everyone crammed together at Pride events scared me. I know many folks already had the vaccine, and lots of others got it over the weekend, but I couldn’t help but feel a bit frightened of the fact that mpox was certainly being spread.

Even though I was someone who had a considerably less “intense” experience with the disease, it was still unbelievably painful and scary. I find myself feeling scared for others and what’s to come because more of us will get this and it is not pretty. I see memes making jokes about it, some from anti-vaxxers and others from people in the 2S/LGBTQ+ community and it frustrates me because I feel folks, perhaps in fear, are making light of the whole thing and it’s not a joke.

The rash in my rectum healed after about six excruciating days. My lesions are for the most part all healed over and growing new healthy skin. I’m certain I’ll have scars from many of them. The red dots remain and honestly, I’m afraid of people seeing them when I finally get back outside. I’m not sure what my dating or love life will look like for a while, the rules for connection and reintegration are fuzzy. I’m not even sure when I should safely start working again. And I wonder what stigma, if any, might come from being upfront about having had mpox. People have a lot of questions for me, and I frankly don’t have answers to the majority of them. I urge people to start doing their research, stay on top of the news and the science, and learn how to protect themselves.

I’m not happy that I got mpox. It cast a shadow over my summer plans and my return to the city. But in some ways, I’m relieved and feel a sort of thankfulness that I’ve had it and I’m vaccinated against it. I’ve managed to find some silver linings, I reconnected with myself in some ways, feel humbled and feel empathetic and connected to others who are also going through or went through it too. According to all the information available I’m allowed to return to “the real world” soon. But I feel vulnerable, nervous, and still full of questions.

For now, I’m taking it one day at a time. I suspect this wasn’t just trauma to my body, but my spirit as well—something I’ll be carrying and exploring for some time. I hope we can all be there for each other as it plays out with kindness and empathy.

Gregory F. is an artist and bodyworker living in Montreal.

For more information on how to protect or care for yourself when it comes to mpox, please click here.

[CBRC asked several folks who contracted mpox if they wanted to share their story, in the hopes of reducing stigma and providing much-needed firsthand information for our communities. We know not enough is being done to support people with mpox and we commend these folks for their bravery in choosing to share their experiences publicly.]

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About CBRC

Community-Based Research Centre (CBRC) promotes the health of people of diverse sexualities and genders through research and intervention development.
Mpox Stories: “A Cruel Coincidence”
Mpox Stories: “A Cruel Coincidence”
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