Lisa Power MBE, former Head of Policy at the Terrence Higgins Trust, on the effects of being HIV positive on everything from relationships to travel.
What do you think about Max Pemberton’s article and the message that everything’s okay with HIV now?
There’s never been a faster-moving disease than HIV, in terms of it going from appearing to us, understanding it, to us having lots of different ways of tackling it that keep changing. I think we have a real difficulty in messaging around it because there are still serious problems with it, but it’s not fatal if you’re tested and treated in time. You can lead a virtually normal life, but only if you’re a very strong-minded person who can cope with the prejudice.
It is true that for people in the UK, where we have the best treatment in the world, you have a better chance of the life you want to lead than probably anywhere else, but it’s still not absolutely equal. There are plenty of things that can go wrong.
You can’t get a job that means you have to travel to the Middle East or Russia. You can’t settle in Australia, Canada or America. You can’t get certain kinds of financial products. You will have intense difficulties with many people about whether they want to be your sexual partner or even your friend. So it’s a real mixed bag – there are some people really invested in the “ain’t it awful” message because they want to scare people into not getting HIV by telling them it’s still appalling in the way it was 25 years ago. And then there are other people who are trying to say, “Get tested, don’t feel suicidal for Christ’s sake – you can cope with this.”
And that’s the trouble – those things clash up against each other. It’s really hard to give people clear messages; what we need to do is let people with HIV speak for themselves about what life is like.
To what extent are heterosexual people with HIV ignored by the government, charities and the media?
It varies hugely because they certainly aren’t ignored by the media. If you’re sat next to a press officer in an HIV charity, the amount of conversations they have with media who want to talk with someone with HIV – but it’s got to be a young, white, middle-class woman who got it from her first boyfriend. Preferably cute. They’re obsessed with that.
But it’s difficult to do targeted service provision for a group of people who are widely scattered and who don’t have much in common with each other. There are heterosexuals who got HIV through drug use, that’s [a] particular subculture; there are heterosexuals who got HIV in another country where there is a generalised epidemic, who often have issues as migrants, with HIV being way down the line. And then you’ve got white heterosexuals who picked up HIV through sleeping with a sex worker or having a bisexual husband – they are all different stories, there’s no group, there isn’t a whole room full of them.
What about straight people over the age of 50? How do their experiences compare?
When I was researching older people with HIV, we tapped into enough older white straight people to be able to do comparative studies. The white heterosexuals were often better-off than the others, but they felt their inequity between them and other non-HIV straight people more keenly. They were more worried about their financial future than other groups and more likely to say they had poor mental health. Whereas African women in fact had far worse mental health by the indicators, but didn’t consider themselves so.
How prevalent is loneliness and alienation among HIV-positive people, and how much does that affect wellbeing?
There is no doubt that having a long-term, unpredictable condition does damage to mental health. There is no doubt that homophobia and racism do damage to mental health. And there is no doubt that any level of uncertainty or losing friends or prejudice or anything that you have to lie about or not tell the truth about all lead to worsened mental health. Lack of disclosure [about one’s HIV status] definitely leads to isolation. There’s a certain amount of research that generally when you hit 50 or 60 you get more depressed but as you get older you become more contented again. There’s some evidence to suggest people with HIV may not rebound. It does worry me. I think isolation is massively exacerbated by the way we [inadvertently] teach people not to disclose – the way to deal with it is to encourage people to be confident about their condition and disclosing it, to dispel the shame. A lot of that comes from being around other [HIV-]positive people who act confidently.
How would you describe life for someone in the UK diagnosed with HIV in 2014?
It’s like tying one hand behind your back – you wouldn’t want it, it won’t help anything and it may hinder. If you’ve got a strong character you’ll probably do okay, but if you’re someone who is already easily stressed out, or you have depression, you’re going to have to take real care.
Max Pemberton's article 'Why I'd rather have HIV than diabetes' in The Spectator.