Living on: Three-letter Lives in the United Kingdom

Abstract

In 2011 I re-interviewed Daniel, a white British man in his 50s who in 2001 had just been coming to terms with his new HIV diagnosis. Ten years on, Daniel was doing well medically. His viral load was low and his CD4+ T cells were looking good. He had supportive family members and friends, though many friends from his youth had died. However, he did not feel well, and he had ongoing health problems related to his longterm HIV illness and ARV use. His family was far away; his remaining friends were working and many were too young to understand the life he had lived. He had retired early, when his health was poor, from a job he found tedious. Now, every day, he had to work out what to do with his life, on a small income. He had found new things that absorbed him, but he described often feeling very alone. Several of the HIV-related drop-ins he used to attend had closed. He decided to come to my university for the interview, largely because this was a different experience for him, and it would occupy his day; not much else was going on that week, for him.

The Government should recognise the scale of the HIV and AIDS challenge in the United Kingdom. Not enough is being done to respond to a steadily growing risk to public health. There are potentially huge cost implications in both the short-and long-term in failing to deal effectively with the epidemic. At a time when public health in the United Kingdom is subject to major reform, the Government should ensure that HIV and AIDS is a key public health priority.

(House of Lords 2011)

This year we’re asking you join us in Standing Up and Standing Out for the 100,000 people living with HIV in this country right now and telling the world that people with HIV need support, not judgement. Thirty years ago Terry Higgins lost his life to HIV. Since then Terrence Higgins Trust has helped thousands of people living with HIV and hundreds of thousands at risk of sexual ill health. A lot has changed in 30 years, but the fight against stigma has never been tougher. Our centres all over the country still routinely come into contact with discrimination, disownment and prejudice. This isn’t acceptable, and that’s why this 1 December we’re asking you to do whatever it takes to raise vital funds and awareness. Together let’s send HIV stigma back to the ‘80s.

(Terrence Higgins Trust World AIDS Day page 2012)

Olive: But with me now, I feel like I’m empowered now. I always do counselling on my own yes, especially with other newly diagnosed, yeah, helping them.

Interviewer: Oh really, so how do you do that, with a group or —

Olive: No, it’s individually yeah, because sometimes we have got a lot of friends, so sometimes you hear so and so is really down, she can’t cope, she’s got problems, yeah. So, we try to contact her, if she wants to come in and talk to us, then we will go and have a friendly talk with her, then he or she can ask questions, so. ‘Are you really’, because some of them they ask ‘are you really positive?’ I tell them ‘yeah, we’ve been there before’, and we tell, we share our own experiences, yeah. That is how it helps, it helps because it’s a long journey from that moment when you used to cry, and now accepted it as normal life, yeah … some have got relatives who are dying, children who are dying, they can’t go home, they are still grieving here. They are dealing with people’s issues, it is difficult, it is difficult. I can put myself in that position. I’ve got a friend who is dealing with that same issue. She went through, she is going through a lot, she is now depressed, yeah. Sometimes I will go their house, sleep over, two days or three days, yeah. I will sleep over then I will invite her, I have told her ‘you are welcome to my house, come anytime, if I am not there then my children are there.’ Because, sometimes I got my grandchildren, ‘feel free, don’t be on your own’ yeah ‘come I will cook for you — if you want to cook anything, sleep on my bed’ (laughs) yeah, because I know what she is going through, unfortunately, it’s difficult.

(UK interview 2011)