Opinion | My 14 Days in Monkeypox Isolation

I laid on the bathroom floor in early June in a cold sweat when I noticed the first lesion, on my inner bicep. Is it a bug bite? There’s no way it could be monkeypox, right? I tell myself I’m just being paranoid, but I snap a quick picture of it on my phone and send it to two of my best gay doctor friends, just to be safe. I reassure myself by doing a quick Google search to verify the low case rate: there are only five confirmed cases in the entire state to date, phew. One friend responds that I’m just being paranoid and tells me to stop worrying, while the other says, “Well…it could be.” I fall asleep on the cold tiles and wake up a few hours later in a sweat, with that terrible cramping rectal pain that had started a few hours earlier. I rinse off in the shower and notice several more lesions on my back. I quickly get dressed and run to the nearest ER.

The next 24 hours were a bit of a blur. The ER doctor frankly told me that he hadn’t seen any cases of monkeypox yet and wasn’t sure how to test or treat it. We agreed it would be best to contact the health department, and he also consulted the hospital’s infectious disease division for good measure. I was profoundly fatigued, so I was in and out of sleep until the next masked, gowned, and gloved individual came into my room to have a look at the lesions and give me another vague update. They told me that according to protocol, I needed to be admitted for monitoring, and I knew better than to leave against medical advice. Adding insult to injury, they then told me I was incidentally positive for COVID-19 as well — just what I needed. I stayed in the hospital for a total of about 6 hours before the infectious disease doctor made the decision that I could isolate at home and monitor my lesions. She said she was unsure when my test results would return to confirm whether or not I had monkeypox, despite her high index of suspicion based on presentation. Finally, she stressed the importance of returning to the hospital if things got worse.

I slept for about 36 of the next 48 hours, waking up with new lesions in different places around my body, and with the continued terrible cramping rectal pain every few hours. During my waking hours, I scoured Google scholar for any information I could find about monkeypox. I recall feeling deeply concerned how little information there was available, how uninformed the general public seemed, and how the news was saying there were only five cases in the state — it seemed unfathomable that I could be one of them.

The subsequent 2 weeks were incredibly isolating. My pain and fatigue subsided within a few days, but I was told to isolate “until all the lesions have crusted and formed new skin underneath.” I did home workouts, puzzles, read books, and watched way too much reality TV. I didn’t leave my home or interact with another human for 14 days. Even when my lesions appeared to have healed, I was anxious about releasing myself back into the wild.

I posted on social media to try to spread awareness about the virus so that friends and followers would hopefully take it seriously and take appropriate precautions. I was inundated with requests for how to acquire a vaccine, for which there did not seem to be a clear plan. Across social media, I received many hateful comments and felt judged, due to the mixed messaging on how the virus was spreading, especially in the gay community. This continued after completing my isolation period: I was greeted in bars by a few individuals saying, “Should you be out right now? Is it okay to be near you or to touch you?” I felt stigmatized, and reflected on how terrible it must have been for those who lived through the AIDS crisis.

I did my best to spread the word that this isn’t “a gay disease,” and cautioned people about the routes of transmission, especially among the queer population where it seemed to be spreading rapidly in major cities. I watched as friends struggled to get tests and vaccines over the next few weeks, and was frustrated by the rising caseload from yet another preventable illness. I wondered if there would have been a more robust government response if this illness was impacting a population other than the LGBTQ community.

Today, well over a month after my monkeypox infection, I remain concerned for how uninformed providers seem to be about an illness spreading so rapidly and resulting in severe pain, weeks of isolation, and mental health consequences. As I watch from the sidelines with my newly acquired antibodies, I fear for the impact of monkeypox in the coming months. I fear for those who can’t afford to take multiple weeks off work to isolate and feel deeply for those who will have to isolate alone for so long. I feel sad for those who will have to endure severe rectal pain and pain from skin lesions, without much information on effective treatments for relief. I fear for how much this virus will spread before widespread vaccination becomes available. For the health of our communities, it’s time to double down on a more efficient and effective monkeypox response.

@thatgaydoctor, MD, is a family medicine doctor in Chicago and an advocate for the health of underserved and LGBTQ populations.