“It was distressing not knowing what symptoms would appear next” – Experiences on getting monkeypox infection

Gloves covered hands holding sample tubes labelled with a text: monkeypox virus. Official form papers in the background.

A person who got monkeypox infection gave an interview to Hivpoint. In this story, he tells how the disease progressed in his case and how the treatment was carried out in healthcare.

How did you find out you had monkeypox?

I had a threesome and one of my sexual partners informed me that he had developed a fever a few days later. I wondered if he had COVID-19. After a couple of days, I started getting symptoms myself, such as a sore throat. After a while, my other sexual partner also developed skin symptoms and began to suspect monkeypox. I contacted the health service and a person there told me that monkeypox could not be ruled out. However, when my nose started running, I was pretty sure I had a common flu. I took a COVID-19 test, which was negative. I also thought that it might be the first symptoms of HIV, but since I’m on PrEP, I knew the risk of HIV was non-existent.

A week after getting the sore throat, I got a high fever and around the same time one of my sexual partners got in touch with me again and told me that he too has skin symptoms. I contacted the medical helpline from where I was referred to the local STI clinic, where monkeypox can be tested. From the clinic, I was told that the sample can only be taken from skin changes.

The next symptom for me was a rash on my face, it looked similar to pimples or inflammation of the hair follicle. I was told that other people with monkeypox have had similar symptoms. The doctor didn’t get a positive result from these skin changes with the test. Around the same time, I started to feel pain in the rectum and went back to the STI clinic. The doctor took a sample from the rectum, and it turned out to be positive for monkeypox.

Taking the sample felt painful. It took a few days to get the result. I was told that if monkeypox has been caught in a sexual situation, the probability that you have contracted other sexually transmitted infection is quite high and that the more sex partners there are, the more likely it is that you will get monkeypox. Other STIs can complicate the diagnosis of monkeypox.

Did you have any information about monkeypox before getting infected?

Yes, I had red about monkeypox and knew that there had been some cases in Finland. However, monkeypox was a new thing to me. I knew one friend who had gotten infected.

When you called the medical helpline and received advice, did you feel that the treatment and service were appropriate?

Yes, the on-call service handled the matter quickly and contacted the right places. Of course, at the local ST clinic, I noticed that monkeypox is a new thing for them and, for example, the instructions for informing close contacts were incomplete and contradictory.

How was the infection tracing handled for you?

I hadn’t had sex with anyone since I was infected, so there was no need to inform anyone about it. No instructions were given to inform other contact. This has certainly changed now that the Finnish Institute for Health and Welfare has updated its guidelines.

How were you instructed after being diagnosed?

I was not placed in official quarantine. I was instructed to have as little contact with anyone as possible, as long as there are symptoms. If it is absolutely necessary to be around people, the areas with skin changes should be covered and a face mask should be worn. I believe that the guidelines have become more precise on this.

What happened after you were diagnosed with monkeypox?

I had to use the ointment prescribed to me at the clinic several times a day and, in addition, I asked the doctor to write a prescription for painkillers. The doctor told me that the situation probably wouldn’t get any worse from this and he believed that I could get by with anti-inflammatory drugs. However, the pain in the rectum got worse by the day and ended up being so severe that both sitting and lying down really hurt. When the pain became unbearable, I called the health center.

I found the service I received from the health centre unpolite. I got the feeling that I was being interrogated. However, I cannot judge whether the treatment was due to the fact that I had monkeypox. I was prescribed a large amount of strong opiate-based painkillers from the health centre, but they didn’t really help me with the pain – they only made me feel dizzy. The health centre advised me to go my local emergency department if the painkillers did not help.

Already during the same day, I had to go to the emergency department due to severe pain. I immediately told them that I had monkeypox and raised the need for isolation with the health care staff. However, I was directed to wait in the public waiting room and use the common toilets. After hours of waiting, I met a doctor who took care of my matter in five minutes. I received a gel that works as a local anesthetic, that gave me the help I needed for the unbearable pain.

Did anyone close to you get infected?

No. Monkeypox seems to be a disease that requires a close contact, such as sexual contact. However, I lived a normal life when I didn’t yet know I had monkeypox and thought I had a mild flu.

Have you completely cured of monkeypox?

The worst thing about having monkeypox was the pain, but the most mentally challenging phase started when the skin began to heal, and the pain eased and new types of symptoms appeared. I felt really exhausted, dizzy and had so-called brain fog. I have heard of similar symptoms from other people who have had monkeypox.

It was also distressing not knowing what symptoms would appear next. It’s now been six weeks since I was infected, and I still haven’t fully recovered. It comes to mind whether the mucous membranes of the rectum will ever fully recover. I have had neuropathic tingling sensations on the face where there where skin changes. Fortunately, no permanent marks remained on my appearance.

In your opinion, how has the media coverage on monkeypox been?

In my opinion, the problem has been that it’s been publicly stated that all the monkeypox cases in Finland have been among men who have sex with men. This must have been an attempt to reassure people who are not affected, such as parents of small children. But it might not be recognized that by saying this it implies that those who are at risk, that is, gay men, that their health does not matter.

However, I think it is important to tell who is particularly affected by monkeypox at the moment and to instruct them to seek information and prevent infections. It is important not to create a situation in which monkeypox infection cannot be talked about in public without revealing ones sexual orientation and sexual behavior. The stigma attached to monkeypox also raises the threshold for seeking treatment, which in turn means that the true number of cases is not known.

Communication has an impact on stigma. However, the facts should not be disputed. The problem, in my opinion, is that there are activists who think that the truth should be hidden. There is also a fear that parents of young children, for example, will not be able to meet their gay friends for fear of monkeypox and that gay people will be blamed for the spread of the disease, as a result of which hate crimes against them will increase. There are already indications of such around the world.

What would you like to say to healthcare professionals who encounter monkeypox at work?

It would be important for health professionals to be informed about monkeypox, especially in large cities. Unfortunately, the reality is that people themselves have to find out about their illnesses. You also have to understand that there are thousands of diseases in humans, and when new infectious diseases comes along, it takes a while before we know how to treat them. It is also good to be aware that a so-called mild illness can be very severe for the carrier. Skin changes in sensitive areas can be really painful. And it is not yet known about the possible long-term consequences of monkeypox, but time will tell.

Read more information on monkeypox from here >>

Read information about monkeypox situation in Europe from here >>