Nicola

Um, what is loneliness? I think for me I have different levels of loneliness. One is something that I can cope with which is just a sadness that there’s nobody else here…, but there’s another infinitely more corrosive level of loneliness, that’s it, and it’s that sense of being excluded from society. That’s the corrosive one. That’s the one that makes me, yeah, that’s the one that makes me feel suicidal. It’s like, you know, I’m not wanted here, I’m not wanted on this planet.

Alan

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.

Tracy

Cold. It feels cold and clinical…and overwhelming. It’s like water creeping up on you. Like if you were sat in a, in a bath or, and then water just came up. You, you don’t, you don’t notice it till it’s too late, in a way. It’s, it creeps in, it, it’s sneaky. It creeps.

Sam

The day just stretches, it feels like it goes on forever, and the feeling of loneliness, I try to keep myself occupied but some days I just, I just lay on the sofa, all day crying because I feel so alone. And, and, and so lonely that I haven’t got people in my life actively.

Marie

I think the loneliness it just con-, consumed me.  It had taken over, it had taken over and but I can [excuse me] and I can see it, it was so many different factors combined in-, into one which then did build up the loneliness because you’re, you’re in a world which is completely alien.

Tracy

I think there’s a lot of emphasis on elderly people, being lonely, and I, I can see that because the thought of not talking to someone, just is horrifying, you know. Yeah, and I think a lot of people think it’s just, just the elderly that suffer from it, but it’s not. It’s, someone who can seem like the most bubbliest person in the world can be also the loneliest person in the world. I think people stereotype people into categories too easily.

Chris

Well I often feel quite strange when I hear about that because they always say it’s the older people that feel lonely, it’s the older generation. So it’s like people that are pensioners or older. They never talk about the younger generation. So they never talk about people my generation, people in their 40s and 50s that might be lonely. The media just never, never discusses them… I think because society expects people at that age to be married, have children, and have their lives sorted so to speak, so they don’t think about people that might be gay, they don’t think about people that might be single, they don’t think about people that might be transexual, they just think about the mainstream.

So that’s 2.4 children, you know the family unit. And I really struggle with that sometimes, and then sometimes that makes me feel guilty about being lonely or feel weird about being lonely, because I think I shouldn’t be lonely at my age, I should have lots of friends, I should have a partner. And then I think “what’s wrong with me? Why do I not have these things?”

Lisa

I: Yeah, OK. So, have you ever gone to social clubs?

R: Yeah, I used to join, I used to belong to two. One special needs social group and one `normal’ social group but they both got closed down because of financial reasons.

I: OK, could you talk to me about those social clubs and when did they get closed down?

R: They got closed down… how long ago was it? It was quite a while ago they got closed down, but it was because of the funding.

It must be hard.

So, they lost their funding which was hard because I was enjoying it. I was enjoying the activities they were doing. They were doing like games, cooking in one of them. All different types of stuff. I think one of them did like a spa where do you like nails and stuff.

Yeah. I was also in another group which was called [name of group] groups, which was… what did I do? I was going there for different meetings.

So, I think one of the groups, one of the things I did there was I did a painting. And I did a massive painting. I think it was an art gallery thing. So, some young people came, and we were painting different pictures that we wanted to paint. And then they would get put up in a park near me where they have art park, like an indoor bit that is art. And they were putting that up which was nice.

And it was nice to go there because, even though I was probably one of the oldest there, I was still talking to other people. But that also stopped and now they only do, because of funding, and now they only focus on people who are like runaway children, if you know what that means?

Allan

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 these, the massage therapies, that all got stopped.

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.”

The links not everyone’s as open about their HIV status, [um] a lot of people who were there, their close family didn’t know they had HIV. [Um] 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, 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?

R: 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.

Francesca

R: Lack of empathy, lack of understanding it was all very clinical they only, I always felt that they only wanted to hear what they wanted to hear and it sort of fudge around everything else, you know, you were trying to discuss something but oh yeah but you feel really quite good really don’t you or you, or look at the positive in what you, you know, they weren’t listening to what you were trying to say, they were just trying to cover over it quick so that they could move onto the next chapter if you get what I mean

And to me that’s no good, that’s not, that’s not help I know they have to fit in time constraints because of money and funding and all that what not, I get that but [um] I think there’s, some of it is the element of the person as well and they all seem to have this air about them that they, they’re better than, you know, they talk to you like you’re, they talk to you like you’re a patient if you get what, they don’t relate to you, it’s very much patient, doctor sort of discussions.

Chris

I: Have you ever tried to join any forum or any support group for loneliness?

R: No.

I: No. Would it be out of your comfort zone do you think? Or is it what we discussed?

R: Do you know what, I’ll tell you… So I have been to a couple of groups, but the groups I’ve been to.. I mean I went to one once which was for gay men that were I suppose you could say lonely, but just gay men that were struggling in their life with anything, it didn’t have to be a particular problem, it was just any struggle you had. So I went to this group situation and there was about 6 of us, but I just felt so uncomfortable the whole way through. I felt embarrassed about talking about my problems, I felt that everybody was judging me, and also in those sort of groups I always found it was one person that tries to take over the whole thing.

So there’s always one person that’s larger than everyone else and always wants to get their point across more than anybody else, and they just annoy me. So I think I’d done about 3 sessions and I just left because I was like I can’t bear that person anymore, and I just left and I did say to the trainer “I’m really struggling with that guy and he’s really making me feel uncomfortable” and the trainer said, “well, you know, it’s for everybody so I can’t tell him not to come” and I went “that’s fine, I’ll just drop out of it, it’s no problem.” So I just find myself really uncomfortable in those sorts of situations. Which is I think why I like therapy a lot more because it’s 1 on 1, you know?

Francesca

I think it’s having trust and confidence in someone that you know you can talk to that you build a trust up with somebody, I couldn’t just talk to someone willy nilly and say about how I felt I think you need that interaction of getting to know someone like I did with [name of support worker]. That support, that feeling that you’re not being pushed that you’ve got someone that’s listening to what you’re saying internally and externally about how you feel lonely and taking it on board. Because I find, well, A like I said earlier I don’t find it easy to interact with people anyway very well sometimes, you know but nice that, I think you need to have that trust in someone that’s gonna, you know, that’s gonna help you just be there.

Sam

After Covid, the main people since my husband’s left, in my life are carers, and they’re paid obviously through social care, direct payments…

I have really good relationships with them. It’s [um] the person who does the morning [um] it’s always the same person Monday to Friday, lunchtime it’s always the same person and I’ve had to, I’ve had to fight and battle for that a tiny bit, with the care agency that supports me at lunchtime.

I: Why?

R: because at some points they’ve sent anyone and everyone and for me that’s not good for me. I need [um] a familiar face.

I: Absolutely. Yes. Yes. And

R: Yeah

I: and how, how did you fight? Was it a, a big battle or,

R: It’s a battle that I’ve had to periodically go back to,

I: Oh,

R: just to remind them. And and it was through telephones and emails and just explaining that for my mental health it’s not good for me to have lots of different people. So, they took it on board and they’ve been very good when my husband left cos he used to cook tea and things like that. And that extra support was put in place for me and again initially it was anybody and everybody, but that was partly because it was an emergency situation, cos my husband had literally just walked out the door. But quickly we got back to you know remember that I like to see familiar faces and

I: Yeah

R: Because they remember about you, and they remember that like for example I had [charitable organisation] marriage counselling yesterday, you know, twice carers today who’ve I seen have said, “How did you get on?” and it’s genuine interest there.

Peter

And then I got a phone call from the social worker and they said it sounds very isolated and he said did you know there’s a Hearing Voices group at [town] MIND so I said no and he says would you like to go so I said no. But this guy didn’t give up he just kept encouraging me to go, he didn’t tell me to go he just kept reminding me it was there. And I went one day and it was a real eye opener and I was, I was scruffy, I didn’t wash I didn’t shave I was wearing rags and I went to this group and there were ten other people there but what struck me was they were all smart and presentable and I thought well they can’t, because I believed in the diagnosis schizophrenia then not now and I thought well they can’t schizos, they should be scruffy like me. And they started to talk about their experiences and at last I thought I’m not alone with this anymore it was a liberating experience, I could take this mask off I’d been wearing for years and I felt I belonged somewhere and that was a big turning point for me

Kate A

And it was only my health visitor that actually was my saviour, she was amazing, cos she’d say, “Kate your house isn’t dirty, it’s untidy.” She said, “But that’s to be [um] normalised,” she said, “Because think about it, you’ve got four children,” she said, “If I came out of your house and your house was spotless, then I’d be thinking Kate’s got four kids, why the hell is her house spotless? You know.”  And she always, she’d take a cup of tea, she’d look about, if she saw the house untidy, she’d be like okay, have they put you on anymore meds? How are you feeling with your meds? She wouldn’t presume and then she’d say, “Are you, can you make me a cup of tea, can I have?” And I’d be like, “What you want tea? You’re gonna accept tea?” And she’d XXX, and then she’d say, “If you’ve got any dishes Kate why don’t we get on with them while we’re waiting on the kettle boiling.” So, she would secretly do lovely things, but I didn’t think that she was helping me that way, until later on… Yeah.

And she’d speak to me about things about her life, like she’d sometimes say, “Would you want to go to the shops? We can go to the café for a cup of tea, you and I, and brew, Kate,” and she’d say “I’d still, am I allowed?” And she, she’d had this mini that her uncle gave her and it was an old-fashioned mini, the old ones, and it was lovely and she’d talk about the mini and how she got it. And I was thinking, oh my goodness, this woman is talking to me about, you know her life. Obviously, she wasn’t going to right into her, you know, but she was talking to me, you know about how her uncle gave her the car, and how she loves it, and she was just being normal.