Then when I was diagnosed I was with a young lady who said she would stand by me, support me, help me, and four weeks later she kicked me out and made me homeless with nothing. I literally had the clothes on my back and my car. Mental health crisis team, they kind of put me up in a Crisis house, XXX said have you got any family you can go to, I thought I suppose my Dad’s house, and they had to put the fuel in my car so I could get to my Dad’s house. And he babysat me for a good few years but even there, living with my Dad, you know going to the pub, and being around people I still felt very isolated because of my HIV. And that people, there weren’t people who got where I was at, and understood the position I was in, and what was going on in my mind. I felt very isolated. Even though I was surrounded by people it was still very lonely and isolating within myself.

I: Because people didn’t understand?

Yes.

When I first moved back to my Dad’s, there was a local HIV charity that covered the whole of [County] and [Area], and I got involved with them quite a lot and I ended up a trustee of the charity as well. But then the director of services passed away, and the new management that came in took the charity in a completely different direction, they stopped the HIV drop ins, they stopped all the clinic work, they stopped all the counselling, they stopped the massage therapies, that all got stopped.

I: Was it an austerity thing? A measure?

It was not applying for the right funding. The lady who took over was very much inclined towards lesbian support, and although she was a fundraising manager, which was what she was originally hired as, she hadn’t spent any time in the HIV sector, and she reverted the charity to what she wanted it to, and she didn’t apply for the HIV funding. Cos obviously and as I was a trustee, I saw the funding applications that went in, so she took the charity in a different direction. Now the charity itself offers no HIV support at all.

I: So, it dropped it completely?

Dropped it completely. And it is now an LGBT charity.

I: So, so I’m presuming that had a lot of impact for a lot of people?

Yeah. There wasn’t a massive community of HIV positive people in [County], but there is a smallish one, I think it’s about 350 people. That’s for the whole county of [County] If you look at London, the HIV positive numbers in London are in the thousands, and that’s just in one town.

I: I understand that. But three hundred and so people are still not negligible.
Oh no. And when all the drop ins and everything finished and the, and the therapies finished nobody had a way of contacting each other, because you didn’t, you tried to, because Facebook’s so open, you didn’t have people on Facebook because of the links of , “Oh he’s got HIV so you must have it,”

I: I didn’t understand that. Sorry could you repeat that.

The links, not everyone’s as open about their HIV status, a lot of people who were there, their close family didn’t know they had HIV because they weren’t able to tell them. So, all of a sudden having a strange group of friends who some of them are very open about HIV status, [um] would then, could then possibly out somebody.

I: Mm.

R: So, people didn’t friend each other on Facebook so when the drop-ins stopped, there was then no contact between the people. There was, and that network just disappeared overnight.

I: That must have meant, made a lot of people lonely?

I assume so. Yes.

I: What about you?

R: I felt very isolated and lonely. Cos, I went from having a group of people who understood the HIV, to not having anything at all.

I: So we live in a society where loneliness is, almost an epidemic. Why do you think other people might be feeling lonely?

I think a lot of it is down to social media. We paint pictures of ourselves and our lives on Facebook, Instagram, Snap Chat, whatever platform, we paint pictures of perfect lives, and we sit there and we look at these images of all the perfect things that everyone else has, and then you look at your own life that isn’t perfect and you then think yourself worse because your life isn’t as perfect as that. And even though we all know that social media isn’t real life, although I have had people tell me that, you know, that it is life and you delete me on Facebook, you delete me in life, that’s a whole different comedy set sketch. We all know it’s not real life, and people only put on the bits that they want to share, but we still see all those bits that other people are sharing, and we judge our own lives towards that. And if we’re not out partying and socialising all the time, because we’ve got kids, or you know we haven’t got the spare funds to be able to do it, or you know, but then we see everyone else doing it and it makes us feel less than they are.

I: What about anything else that you, any other coping mechanisms with dealing with loneliness?

Just to keep myself busy? Keep myself doing things. I have more hobbies than the majority of people could even think of. I you know I collect tools of all sorts of different things from woodwork to carving, woodturning, metal work, engineering, mechanics photography, model trains, model building. I’m forever doing something.

Because the HIV charities are all either waning out, running out of funding, just aren’t there anymore, We, yeah, the group that is on Facebook, that particular group has kind of taken its place as that support network. Yeah it doesn’t have all the whistles and bells that the full charities did/ You know the help with funding and you know the help with benefit enquiries, things like that, but the peer support. I can have a bad day, I can put a post on the group and within half an hour there’ll be three or four people there supporting and, “Areyou okay?” you know “What, what, how can we deal with this?” Different ideas. Just general support.