Mpox Stories: “By spending a few moments looking more carefully, I’d diagnosed myself”

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.

I’m a teacher and was getting ready to go on a trip to a cottage with some friends at the end of the school year when I noticed a little zit on the tip of my thumb. But I didn’t think too much of it and went on the trip.

About a month before, I had asked my family doctor if I could get the mpox vaccine. I’m a sexually active gay male, and I live in a small town. I wanted to get the shot from my local doctor without having to drive 2.5 hours to Toronto. My doctor said that he didn’t know how to get it but that he would look into it for me. The response he finally got from Public Health was, “We don’t know when we’re getting it, please don’t call again.”

When I returned from my trip, I didn’t feel well. I had a rash going up my back and a couple of spots on my chest that I assumed were spider bites. However, I had an underlying thought that it might also be the symptoms of secondary syphilis. I was very concerned about my health and went back to see my family doctor the day after I had returned. We had the usual discussion about cottage spiders and STBBIs and he filled out a requisition for bloodwork. I was still worried and asked for (demanded) immediate treatment for syphilis. Thankfully, he agreed and had the appropriate dose of the medication on hand at his clinic. If you’ve had syphilis, you know how painful those shots are. I did not want to take the risk of delaying treatment while I waited for the bloodwork to come back, as the rash was quite severe, and I felt very unwell.

After the shots, I waited in his office for the required 20 minutes to be sure I didn’t have an adverse reaction. While he was out of the room, I looked at my arms and legs and it hit me: I had mpox! A Google image search on my phone confirmed my self-diagnosis. Just by spending a few moments looking more carefully, I’d diagnosed myself!

When he returned to let me go home, I shared my thoughts with the doctor and showed him the comparisons I had found on Google. He immediately took a swab of the now very large, oozing, and painful sore on my thumb, and sent it off to my local public health unit for analysis. My doctor also took a blood sample and sent it for testing. He’s a very good human, but he had no knowledge about mpox and said that I likely knew more than he did at this point. The only advice he had for me was to go home and wait.

Public Health called me later that day and said the test would come back in a day. It ended up taking four-and-a-half days and came back positive. Luckily, as a teacher, I was already off and didn’t lose any work because of it. The medical experts I spoke with said I would need to isolate for two weeks, but that they’d also heard it might take a month. In my case, I remained in isolation for seven weeks. I don’t think I’m better yet, and no one has seen me—they’ve just told me that I’m better. But I’m scheduled to go back next week, and I’m concerned because I teach little kids who crawl all over me.

In terms of symptoms, I experienced a fever and all of my joints ached. The symptoms are close to syphilis and it’s easy to miss that because you don’t have the pox yet. I know someone else who has it, but he initially thought it was bug bites from mowing the lawn. All of the pox are painful—I had a few in my ear and, of course, the biggest one is on my butt and I’ve been sitting on one cheek for six-and-a-half weeks.

The part that is the hardest to take is that I had asked for the shot, was met with a non-answer to a solvable problem, was basically refused, and then actually got a pretty bad case of mpox! I mean, there must be a person in provincial government to call that can tell the public health units when to expect a delivery date, or advise on a local pop-up clinic, or something rather than the “Don’t call us again” response I got.

Over the course of my illness, I’ve been given no pain medication, and no-one has come to examine me. There’s been nothing given to me for symptom relief or any information telling me what to expect. I wasn’t allowed to go grocery shopping or anywhere else. There were no supports provided by my local public health unit. It was awkward to tell my parents, but they live close by and did some of my grocery runs for me. They didn’t want me to tell my nephews or my sister.

I was in a 15-year marriage and when we split just over two years ago, I found some sexual freedom. I’m a good guy. I go to work every day, I pay my taxes, and I am a sexually active. I’m also very clued in when it comes to my sexual behaviour. But living in a small town, having mpox is like having a scarlet letter. When asked by neighbours about all the bandages I was wearing, I feel like I have to lie and say I was attacked by wasps when I was working on the lawn. There are 21 bandages on my legs and arms and torso. I keep away from people when I walk my dog. I’ve felt humiliated the entire time. The isolation is awful.

The only thing I got from Public Health was three phone calls to check up on me, a few texts from a somewhat panicked nurse, and orders to stay home. I was recently told that I can come out of isolation as all of the pox on my hands and arms have healed over and new skin is forming. However, I’m still worried that I’m going to pass this on to people because, as I mentioned earlier, I still have a few in my ears and noticed new ones on my torso and forehead the other day. At the beginning of all this, nobody told me to cover the pox with bandages, and how covering them appropriately helps the scars heal and can minimize their impact on your skin long term (until I saw a post on the CBRC website). There was no meal program or social support out here.

I’m lucky I have a financial and social net but I’m very aware of those who don’t. I can’t imagine the stress of having this virus, being in isolation for a long period of time and not having the money, resources, or social supports of friends and family around you. I was lucky. I could afford to order my groceries online for 7 weeks (barely) and pick them up myself from the overly expensive Loblaws that is a 20-minute drive away while maintaining the required social distancing. Heck, I’m lucky I have a job that allows me the privilege to have enough money to pay for my car. Many people do not have the option of driving to get their groceries out here.

There were also no Covid-styled mpox financial relief programs from the government, no supports for people with mpox that I can see. If I missed one paycheck, I might be ok, but if I missed two, it would ruin me. I thank the universe I am a teacher, with benefits and sick time, and that I was on summer break when it happened. But how can they send me back to work when I have open sores in my ear and two or three more under bandages?

As someone who lives in a rural area, I’m frustrated by the lack of care that I, and others in my community, continue to experience when it comes to navigating health-care services. Many people in my community are closeted and, I assume, too afraid to ask for STBBI tests from their family doctors. Nobody here gets tested for anything. Based on my experience, if they do have the courage to ask their doctor for STBBI testing, they are likely humiliated and shamed.

For instance, when I moved to rural Ontario five years ago, I had an incredibly hard time finding a family doctorbut not for the reasons you might expect. The five doctors that I was able to schedule a first-time consultation with all proved to be disgustingly homophobic. They seemed unable to treat me with respect, as a human being, and were all obviously and painfully ignorant of gay men’s health. They were biased, homophobic and had an unwavering negative fixed mindset about gay men and what we represent. I felt ashamed and humiliated by the time I left each one of the short initial consult meetings I was given. Thankfully, I eventually found a wonderful doctor about an hour away from my home (the opposite direction from work) who took 1.5 hours during our initial consult. I was treated with the respect that all human beings deserve. While he may not have been an expert in gay men’s health, he was willing to educate himself, and had no problem reaching out to the health-care team I had worked with in Toronto for the previous 25 years.

With mpox, we all have to advocate for ourselves, and not many people have that ability in rural Ontario. Isolation was hard on me, and I have social supports. I think this is an opportunity for gay men from every part of the province to connect with each other. Even if you don’t know someone, reaching out and trying to connect can positively impact a person’s well-being during a painful, scary, and challenging time. Forming community and connection amongst all of us is huge.

William B. (a pseudonym) lives on the outskirts of a small town in rural Ontario.

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.]

Disponible en français.


About CBRC

Community-Based Research Centre (CBRC) promotes the health of people of diverse sexualities and genders through research and intervention development.
Mpox Stories: “By spending a few moments looking more carefully, I’d diagnosed myself”
Mpox Stories: “By spending a few moments looking more carefully, I’d diagnosed myself”
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