Molluscum and shame: why I stayed silent for so long

A subject nobody talks about

Everyone talks about colds. About back pain too. Almost nobody talks about molluscum. Apart from my partner, whom I lived with, nobody knew about it in those two years. At home it couldn’t be hidden. I told no one else.

Instead, I was constantly preoccupied with questions: Can anyone see it? What would people think if they knew?

At first we could talk about it openly. Over time it became an exhausting topic that never went away, and at some point we stopped talking about it altogether. Looking back, my skin wasn’t the hardest part. The hardest part was that silence.

Where the shame came from for me

I have thought a lot about why this subject in particular was so hard to put into words. For me, several things came together.

• The word “contagious” is right there in the name: molluscum contagiosum. I felt like a danger to others.
• I felt unhygienic, even though I was paying more attention to hygiene than ever before.
• Molluscum is often associated with the genital area. That makes it even harder to talk about openly.
• I was unsure. For a long time I didn’t really know what was happening on my skin or why it wouldn’t stop.

Each of these feelings on its own would have been unpleasant enough. Together, they meant I preferred to say nothing at all.

What I read about how common molluscum is

While reading, I realised that I was anything but an exception. The Mayo Clinic describes molluscum contagiosum as a fairly common viral skin infection. Children are affected most often, but adults can get it too.

The American Academy of Dermatology, the large professional body for dermatologists in the US, names several groups who are affected particularly often: children between one and ten, athletes who have skin contact or share equipment, people who are sexually active, and people whose bodies struggle to fight off infections.

That is a very mixed group of entirely ordinary people. To me, this list showed that molluscum says nothing about a particular type of person. It can affect a great many people.

Not a sign of poor hygiene

Feeling unclean was one of the hardest parts for me. I kept my towels separate, disinfected and washed a lot. Even so, I often felt dirty when I looked at my skin.

Later I read up on how the virus is actually passed on. The American Academy of Dermatology writes that people usually catch it through skin contact, through objects an infected person has touched, or by sharing things like towels or clothing. I didn’t read anything there about poor hygiene as a cause. There is more on this in the article Myths about molluscum.

What the silence did to me

For me, silence led to withdrawal. I saw fewer people, avoided touch and cancelled some plans. I skipped sport, the swimming pool and the sauna. I even gave up holidays, because of hotel towels and other things that many people use.

I didn’t want to explain to anyone what was going on with my skin. So I didn’t explain anything at all. That made me feel even lonelier.

I read in a large British study from 2015 that this kind of thing is not just imagined. It followed more than 300 children with molluscum. For most of them, the burden in everyday life was small. But for about one child in ten, the impact on quality of life was very strong. The study is about children, not adults. For me, it still shows that the emotional side is real.

Today I believe that shame feeds on silence. As long as I said nothing, I could imagine at my leisure how bad people’s reactions would be. Nobody could contradict me.

Only while reading, including in forums, did I realise that I wasn’t the only one. Many people write there anonymously, just as I do on this site. To me, that shows how big the taboo is, and also how many people are affected.

What helped me put it into perspective

The shame didn’t disappear overnight. But a few thoughts helped me adjust the picture I had of myself a little:

• Molluscum is a skin infection caused by a virus. It is not a judgement on a person.
• Catching it doesn’t necessarily mean you did something wrong. Skin contact and shared things are part of normal life.
• Reading reputable sources such as gesund.bund.de (in German) helped me tell rumours apart from knowledge.

But what helped me most was something else: slowly understanding that thousands of people have exactly the same thing. I wasn’t alone with it, and if you are reading this, neither are you. And it is not a question of hygiene.

But I only truly lost the shame once my skin visibly changed and the spots finally disappeared. Was it coincidence? I don’t know.

How hard I found it to talk about molluscum and intimacy, I describe in the article Molluscum and intimacy.

Why I am writing about it today

This site is anonymous, and that is deliberate. But it is also my attempt to break the silence a little. Back then, I would have wished to read the honest story of an adult who had been through the same thing.

If you are in the same place right now: you are not alone with this. After two years it was over for me. Was it coincidence? I don’t know. How it came about, I tell in my story.