31 October 24

Ending HIV

Facing mpox

Ken’s experience getting diagnosed with mpox

Mpox is back, and with over 550 cases in NSW and counting it’s more important than ever to learn about mpox, make sure you’re protected with a double dose of the vaccine and keep an eye out for any symptoms.

Ken shares his experience with mpox

We reached out to the community to hear about your experiences with mpox and spoke with a local Sydney guy. He graciously shared his journey from learning about mpox, getting tested and his recovery in the interview below. To respect his privacy we’ve opted to use a pseudonym throughout this piece, so we’ll call him Ken!

How did you learn you had mpox?

So I think I got it from a sex-on-premises venue (SOPV) in Berlin in June 2022. I was feeling a bit frisky and thought why don’t I check out this sauna that everybody’s raving about? So I went!

Then on the flight back, I had this intense fever. Otherwise, I’m not feeling particularly sick or anything, I just had this hectic fever – I was like OMG, as there was quite a lot more focus on COVID at the time, and I remember thinking I’m going to get in trouble for having a fever.

When I got back home, I went to the emergency department at the hospital, where they thought I had some sort of bacterial infection. So they gave me antibiotics, and then I went back home.

Next, I notice I have this pimple-like thing on my balls. I have quite a hairy junk area, and I quite often get ingrown hairs and sometimes pimples down there, so I just thought it was one of them. But it was quite persistent. I also noticed one of my lymph nodes in my groin was a bit swollen and wasn’t going anywhere.

Finally, I was sitting on Scruff one day and I remember seeing one of ACON’s mpox ads that said ‘Hey, have you been overseas? Maybe you have mpox?’. I thought probably I’ve been at risk and I better check it out. So I went to the first available GP and she tested me for it.

In 2022 we were still coming to grips with mpox, so how did testing with a GP go?

So I went and tested with the first GP I could get, mine wasn’t available. This GP, poor thing, had no idea. She was reading from the NSW Health website at the time and told me it was very rare and then sent me back home.

Then about an hour later, it seemed like she’d done some more reading and was more informed, she asked me to come back in and do a PCR test to confirm, which I did. Then an hour or two later she gave me another call saying that yes I have mpox.

Other than that sore on your balls, did you experience other symptoms?

At first, I had just that one sore that stayed around for a while, but then after I was diagnosed I had maybe 10 to 15 show up throughout my body. I remember waking up every morning and a new one will pop up. Just one at a time, but every morning for like two weeks.

Were they all in the same area?

I had one on my toe, on my leg, on my lip, on my chest, on my arm… I would wake up every morning for two weeks discovering a new one and think it’s still not over!

What happened after you found out about your diagnosis?

So after they figured out that I had it, and this was before vaccines became available, so I had to self-isolate and they put my partner at the time up in accommodation to prevent him from catching it from me. Initially, it was for a week but then got extended and he ended up staying there for five weeks.

My partner worked in health, so he was quite understanding and accepting. He never made me feel bad about it, but it still made me feel… It’s such a bummer. I remember feeling so unlucky, I was like, why? Why me? Is the universe trying to teach me a lesson? You know you get in your head about it.

[Editors Note] Self-isolation requirements in 2024 in general are less strict, however, if a person is at a higher risk of spreading mpox they may still be asked to self-isolate from housemates. Ultimately it’ll depend on the individual’s circumstances and the advice provided by their doctor.

It sounds like you went through it while self-isolating!

That was the hardest part. Being home alone, you know what I mean? The idea that I could give this to someone that I care about so dearly and deeply was the worst part. I remember wanting to hug him and touch him, but I couldn’t. It was also like, what do we tell people?

How did you approach that?

I was allowed to go out and do things, but I just wasn’t allowed to be physically close. There were a couple of instances when we were out at lunch, and I dodged a few questions about it. I was wearing band-aids on any of the sores on my hands, but I remember feeling really bad and paranoid about it. Like, what if I gave it to someone?

There’s so much stigma, and I felt like I was constantly at risk of giving it to someone else. It definitely had an impact on my relationships, close ones with my partner, family and even my workmates.

Did that affect your work life?

Yeah, it was also quite stressful. How do I explain to people at work, that I need to be off for 5-6 weeks? I had to wait for the sores to clear when they dry out and fall off. It took ages for new sores to stop emerging, it was about two weeks. But then it took three more for it to clear before I could go back in.

Did your work ask about the time you had to take off?

Legally they can’t ask for the specifics. I used all my sick leave and then I was like, guys I can’t come to work, I have to work remotely. Work came back saying they were trying to find a policy to allow me to do that, but it has to be medically certified. I told my doctor and she gave me a letter and they said it was not quite elaborate enough.

Then I was like, listen, I am at risk of spreading an infection. So for me to work from home is actually to protect you. So then they asked for another doctor’s letter explaining this a little bit better. It didn’t have to say what you have, but it had to elaborate a bit more.

Do you need to get vaccinated now that you’ve had mpox?

No, in my case it’s not needed, but I think I’ll get my antibody count done next year to confirm. They did my antibody count earlier and I think I have six times more than someone who’s had a double dose of the vaccine, that’s the best part of it.

I have a friend who got mpox recently, and he knows that I had it quite a lot. Where he’s double vaccinated, so the symptoms he’s experiencing are quite mild in comparison.

Your mpox diagnosis happened in 2022 before there was a vaccine available, would you recommend others to get vaccinated now?

Absolutely, just get it!

But also just don’t be like, ‘Hey, I’m vaccinated’ and go ahead like an outbreak is not happening. Be more aware of your body and your partner’s body, you know? Look, feel, talk about this thing! The last thing we need is another fucking virus, right?

Right! Thank you so much for taking the time to share your story today Ken

Thank you!

Useful Links:

We hope you’ve found Ken’s experience insightful. For more information about mpox, symptoms and finding a free vaccination. Check out the below:

• Find your nearest vaccination clinic
• Learn more about symptoms
• Get your question answered – call the Sexual Health Infolink (1800 451 624)