Living with HIV

Tom Hayes was diagnosed HIV positive in August 2011 after a routine test at a local sexual health clinic. We chat with him to find out what it’s really like to have HIV

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Did you ever think you would catch HIV?

It wasn’t really something that was on my radar. I’d been going for sexual health check ups now and then but I’d always said no to the HIV test. It wasn’t until I’d been in a relationship with someone and I found out he’d been unfaithful to me that my friends recommended I went for a HIV test. The first one came back negative, and then I went back another six months later and that one came back HIV positive. There’s a three-month window period from being infected and it showing up on the test, but at the time I wasn’t aware of it.

How did your family and friends take the news?

I didn’t tell anyone initially apart from a couple of very close friends because I wasn’t sure how to deal with it. It wasn’t until about a year later that I told my family and friends but they’ve been very supportive. I was terrified that they were going to freak out and abandon me but every single one of them has been supportive.

How does HIV affect your life now?

HIV has changed hugely in the last 30 years. It’s gone from a death sentence to a serious illness to now it’s considered a manageable, long-term condition. I take one pill each night with my evening meal and that keeps me healthy and non-infectious. Most of the problems I’ve had have been social rather than the medical side of it, which is ticking along very stably now. I have taken it upon myself since then to educate other people about what it is like to live with HIV.

HIV2How does having HIV affect your relationships?

It hasn’t really. I’m in a year-long relationship with a HIV negative guy and he’s been fine. Sharing your HIV status with somebody is actually quite a big step to begin with and it shows you put a certain amount of trust in somebody which is great for your relationship but also the whole medication making me non-infectious thing opens a lot of doors and makes people a lot more easy about being in a relationship with a HIV positive person. Tom has been so supportive. He helps me with my activism as well so I couldn’t be happier.


How important is getting tested?

It’s incredibly important. These days it’s just a finger prick and it takes five minutes to get results. You should get tested every six months if you’re sexually active. Someone tested HIV positive today will live a long and health life. But someone that leaves a long gap between being infected and getting tested won’t. For the sake of a five-minute test it’s not worth the risk.

How does having HIV affect your mental health? 

It is said that 75 per cent of people living with HIV would suffer ill mental health at some point, which is a dramatic increase from the 25 per cent of the general population. A lot of that comes from attitudes and social pressure on people living with HIV as well as self-stigmatisation. Having HIV is a huge thing to deal with. I’ve dealt with depression since my diagnosis and a certain amount of isolation as well. A lot of people tend to self-isolate once they’re diagnosed to protect others and to protect themselves from potential rejection.

The number of people with HIV is actually increasing. Is there a particular reason for that?

Through events like national HIV testing week we are testing more and more people each year, which can contribute for a slight increase. On the other side though we have concerns that education is getting worse in schools again, especially with academies and free schools where they don’t have to necessarily adhere to the national curriculum. Those that don’t know they have HIV cause four out of five new HIV infections. So unless we get those people tested and on treatment it’s just going to keep going up.

What advice would you give to someone who’s just found out that they’re HIV positive?

The main thing is don’t go through it alone. Your friends and family will cope with it a lot better than you probably think they will. You don’t have to tell everybody at once. Tell maybe one very good friend you can trust to start with. There are also so many support services online like myhiv.org.uk where you can talk anonymously to other HIV positive people and that can give you a real confidence boost. You’re not alone. Just talk to someone.

You can Follow Tom on Twitter @PositiveLad

About The Author


21-year-old magazine journalism graduate and freelance writer.