HIV gave me a new purpose

Find the publication on the Erika Lust Blog

HIV is a burden. A responsibility. An annoyance. A commitment.

HIV is a responsibility. And dare I say; HIV can be sexy.

Of course it wasn’t always like that – the initial diagnosis caught me off guard. Coming out of nowhere it was an assassination upon the life I used to know. Especially being a heterosexual man; I always thought this wouldn’t affect me. Didn’t other people get diagnosed? I had always felt bulletproof. Condom use was standard; but more out of the fear of an undesired pregnancy.

The diagnosis ended the life I knew. I used to live the cliches of masculinity; mansplaining my worldly wisdoms and playing it too cool at all times. The façade of the “strong man” had always been my priority and what lurked behind it didn’t matter. Until HIV ended it.

Growing up in the 80s my picture of HIV hadn’t been updated in over a decade. The same problematic misconceptions I fight today were the first ones that came to mind after I was told “your test came back positive”. Panic ensued.

Will I die a slow and horrid death? Will I ever have sex again? Can I even have children? Will HIV change my body? HIV vs AIDS – remind me what’s the difference again?

Reality struck like a hammer. I was over.

A long, dark depression ensued and for over two years I chastised myself, doubting every single decision I made.

HIV led to insecurities and a self-hatred I had never experienced before. The first months I thought that I could feel an alien entity under my skin, my blood and sperm felt venomous. The physical symptoms came – an annoying cold, a flu, a chronic dry cough, a strained pain in the solar plexus, cracked dry skin, and fungal infections.

Yet in reality these physical issues were dealt with rather quickly and a few weeks after I started therapy, all of these symptoms vanished. Even my viral load sank under the “detection limit” (making me uninfectious). The medication works without side effects; a pill a day and I’m well taken care of. After a few months, a new normal sets in. No weight gain or loss, No loss of appetite. No additional burden.

But the social virus—the emotional burden of stigmas and feelings of guilt—can be even more toxic and treacherous than the virus itself.

Life was reduced to feelings of guilt and fear. I started to lead the life of a double agent, always scared to reveal too much about myself. Paranoid of people knowing my status, I lived in an emotional lockdown.

The time of my infection was ingrained in my mind. By chance a lover from my past was visiting my city. We had always felt an intense connection. Lust and passion were triggered again after we saw one another, and we locked ourselves into a hotel room for a weekend to forget about space and time. She was on her period, but that didn’t matter.

She didn’t know she had HIV. She was highly contagious at the time.

A few weeks later the virus reared its ugly head, striking me down with waves of high fever and malaria-like symptoms. But not even my doctors would think of HIV. Me? A straight white guy? We don’t need a HIV test, it must be something different.

A few months later I was diagnosed by chance. The discovery came early and my body didn’t suffer too much damage. I got lucky.

Dating was horrid. With no confidence and only equipped with a deadly virus, I wasn’t very attractive. Saying “I’m HIV Positive” with insecurity is pretty unsexy. My ideas of masculinity were utterly destroyed.

With every rejection, my anger towards women grew. Ugliness in life breeds anger and hatred and the easiest way to channel it is by pointing the finger at others.

My loneliness, my inability to share, to hold, to hug and to cry – my sources of passion needed healing. But healing isn’t found in testosterone driven anger, or hatred or blaming others. I realised I had to go onto the dreaded inward journey. The confrontation I tried to run away from for so long.

I started writing and exploring my feelings, my traumas, my insecurities. I studied this magnificently deadly organism that was causing so much grief. I became aware of my own self pity and my privileged position. I started questioning the constructs of manhood around me. How I grew up and how I acted towards women; towards LGBTQ people; towards, well, everyone

I wanted to take responsibility and use my privileges to teach and update people like myself so many years ago. If someone in my position can’t do this; who the hell can?

All the things I learnt about HIV – about the detection limit (that my medication makes sex even without a condom safe) changed from the theoretical reality to the confidence of feeling safe. That I can’t transmit the virus. That I can have children. That ironically, I am probably one of the safest sex partners you can have! I get tested every three months, I’m well monitored and I know what I have and how to take care of it. 

The more I wrote, the better I got. HIV gave me a new purpose. And a new awareness. The inward journey allowed me to rediscover the passion I used to feel. Allowed me to fall again. To tease, tickle and play. To appreciate touch in all its delicacy. Touch of a finger, touch of a tongue. Touch of a fingernail causing goosebumps. Pure pleasure. Being able to fall into passionate frenzies again. A sexual awareness that equals absolute freedom.

A new appreciation of sex, of life and love grew upon me. And although I started writing under an artists name, I inched myself forward, revealing more and more of myself until today, where I can openly say “I’m HIV positive and I’m really fucking fine with it.”

In fact, I’ve come to realise that the confidence of responsibility and of my own sexual journey can seem attractive, dare I say sexy, to others!

Knowing I never infected anyone is a blessing. Knowing the dark downward spirals I can experience is as well. And knowing that I could find my way out again feels like a superpower.

For despite HIV being well under control (in Western Europe!), and that one pill a day keeps me and my sexual partners safe, HIV is not defeated. There’s a fine line between fear and belittlement.

Knowing about HIV and your HIV status is a responsibility. To you and your loved ones. Knowledge is not only power – knowledge disperses fear.