World Aids Day 2014: My HIV status isn’t a secret, but it should be up to me when I tell you

Forcing or rushing a disclosure, especially a public one, rarely goes well

Tom Hayes
Monday 01 December 2014 13:57 GMT

For many people their HIV status is a secret, something kept close to their chest so that they might not lose their job, their friends or even their family. It can be a lonely way to live – I should know, I used to do exactly the same.

When I was diagnosed HIV positive in 2011, I was quick to brush up on my knowledge of HIV and its treatment; I’m a science geek and a control freak and at that point I just needed to be in charge, that knowledge was my power. I felt reassured that treatment had advanced so quickly, and that I’d live and long and healthy life – but at the same time I was terrified that someone might find out and tell the world.

I didn’t want to be “that man with the aids” in my village, and I didn’t want to end up alone – abandoned by those who I loved. So I stored up the information inside, where it ate away at me. I felt the secret like a pressure on my chest day and night.

Then one day, that control was taken away from me, and in the worse way possible. In an act of revenge, someone who I had been dating decided to share my HIV positive status on the internet. Their slurs covered my Facebook and Twitter feeds. It was so devastating that I made an attempt on my own life – stopped only by a friend who caught me

From that moment, I knew there was no going back. It was out there. Some people knew, some people thought they knew, and others were starting to hear the rumours. The control freak inside me was reaching melt-down, I had to take control of the situation – and fast.

I prepared a statement and shared it online, hoping to to put pay to the gossip. It was my way of taking ownership of my status. It certainly wasn’t something I had ever planned to do, but with my hand forced I had no option.

Luckily, the reaction was overwhelming positive and I haven’t looked back. But to me, one thing remains clear: no-one should ever be put in the situation I was. Your status is your status, and yours alone. You may be positive or negative, but it’s no one’s job to tell anyone else.

Through my work with beyondpositive magazine, I’ve helped many people come to terms with their HIV status and practice disclosing. Some take to it faster than others and some may go further than others, but each and every person does it at their own pace. Forcing or rushing a disclosure, especially a public one, rarely goes well. I’ve seen far too many people hurt by taking on too much, too quickly.

Today Prince Harry has launched an initiative called #feelnoshame, urging people to share a personal secret in support of those living with HIV. Whilst I applaud the initiative, and think that anything that encourages people to be more open with each other, especially when it comes to sexual health and HIV, I also want people to take time to really think about what they share, and ensure they are sharing at their own pace. Once your secret is out there, there’s no turning back. You need to own it, the choice to share must be yours alone.

Isolation caused by HIV is real, and it hurts. In 2014 there’s no need to be alone. If you don’t feel able to share your status online why not take today to share it with a trusted friend? If they’re a real friend they’ll be there for you – whatever life brings.

Join our commenting forum

Join thought-provoking conversations, follow other Independent readers and see their replies


Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in