05/04/2018 10:35 BST | Updated 05/04/2018 11:20 BST

I’m Completely Open About Having HIV – But Not On Grindr

I have my height, I have my photo, I have what I’m into, but I don’t have my HIV status on there.

Thomas Trutschel via Getty Images

There are pros and cons to both being very open and upfront about HIV and keeping it more private, because it’s an individual decision and a complex one.

And that decision is complicated further if we can’t trust that the information we put on dating apps and websites is being held securely, as shown by the backlash Grindr received this week for sharing HIV data with third parties.  

Ultimately, when questioning whether to ‘go public’ or not we don’t need the extra worry that this information might be sold or transferred to other people without our knowledge.

I couldn’t be more open about having HIV – I work for HIV charity Terrence Higgins Trust, I blog about HIV, I tweet about HIV, I talk in schools and businesses about HIV.

But I don’t have it on my Grindr profile. I have my height, I have my photo, I have what I’m into, but I don’t have my HIV status on there. Because dating (and hooking up) with HIV adds another layer of complication. After my HIV diagnosis nearly 10 years ago, I stopped looking to find a partner. With HIV I thought I would be single forever.

Then, just three months later, a chance meeting turned into the longest and most serious relationship I’ve ever had. It was during my time with this partner that I got to grips with HIV. My confidence grew to the point where I wanted to breakdown the myths and ignorance that surround the condition and I’ve been openly talking about it ever since.

But following the breakup of that relationship a couple of years ago, I found myself vulnerable again. For the first time in a long time I cared about what people thought about me, and I cared about the reaction to having HIV.

It was a big enough deal having to think about ‘how’ to date again, let alone throwing HIV into the mix.

On dating profiles I mention the work I do in an HIV charity and this allowed the topic to come up into conversation without having to force it. To begin with I didn’t encounter any problems and I started to think about adding my status into my bio but, after a couple of disastrous dates with guys who saw me as a danger to their health, I backtracked. 

And the biggest challenge of dating with HIV is not knowing if HIV is the issue. Did he stop talking because the conversation naturally dried up or because I’d told him the night before? Are they just a flaky person who doesn’t know what they want, or did they recoil in fear when they asked, ‘so do you work for an HIV charity because you’ve got it?’ and I responded with ‘yes’?

This paradox is something that doesn’t get easier with time.

It’s very easy to focus on negative conversations but I have met and been on dates with many guys who don’t care about the fact I have HIV. And in an age where negative guys are sharing the fact they take PrEP on profiles, there’s a whole host of guys who you can assume will be more clued up about what it means to live with HIV in 2018.

Similarly, charities like Terrence Higgins Trust have done a lot of work to promote the fact that people living with HIV who are on effective treatment – like me! – can’t pass the virus on. But, despite how widely that message has been endorsed by anyone who’s anyone in HIV, there are still many people who won’t accept it.

That’s why the ‘HIV positive – undetectable’ guys on Grindr are doing an amazing job of taking that message into the gay community and challenging the stigma from within. 

I know that talking openly about HIV is the best way to challenge stigma, which is why I do it in so many other places. But, when it comes to dating and sex, everything I do can’t be for the greater good.

Guys who are open about their status on Grindr are sticking their head above the parapet and helping to start conversations and educate people, which is undeniably brilliant.

I just hope this data-sharing story doesn’t stop anyone who wants to from being open – because they’re helping to change things. HIV has changed out of sight since the 1980s from a medical point of view and we need as many people shouting about that as possible.