Mental health and loneliness, or, “The impossibility of comprehending loneliness in the mind of those not lonely”

Mental health and loneliness often go together; but can people together bring the two to a better conclusion?

Some tea waiting to be drunk

The following is a slightly extended version of a talk on approaches to loneliness led by people who experience mental health difficulties delivered by Mark Brown at “Loneliness and Social Isolation in Mental Health network launch event”, Friends Meeting House, London on 3rd December 2018.

Loneliness is something that sits close to my heart like a piece of shrapnel. I grew up feeling lonely. I came of age feeling lonely. I travelled through various stages of my life feeling lonely. At times my experiences and my mental health felt like a kind of bomb in my chest that might go off at anytime in polite company, when I ever found some. I felt different, marginalised, as if an urchin face pressed against the window of other people’s social lives, feeling the warmth through the glass but never having it for myself to take home.

In one way or another all activities led by people with mental health difficulties are answers to the question of loneliness, whether the people organising them realise it or not. So much of the experience of mental health difficulty is about exclusion and shame and feeling like the only person in the world who is feeling the way you do, that any activity focused around mental health becomes a battle to find a home or a place to belong or to build it for others.

The potential for peer-led things to provide places for people to be together and to get to know each other is huge but it is always a challenge. People who are lonely cannot always be the people who extend the hand of invitation and fellowship to others. At its most intense, loneliness erodes the sense of comfort and ease we might expect to have with others, raising the stakes of every interaction, making it so every contact, however small, faces the pressure of being expected to make up for all of the other support, friendship and love we have not found elsewhere.

People who have been lonely tend to get lonelier as time goes on. Loneliness is a chronic experience. It stretches over years and decades, as well as hours and days. This gives the research and development of interventions to combat loneliness a kind of survivorship bias. We develop things for the people we see; the people we meet. They’re not the ones who aren’t there; the ones who have stayed away or never found us in the first place. Their stories don’t appear in discussions about loneliness because they never get to those discussions. Interventions around loneliness are often made by people who can only imagine what lonely feels like.

Peer or user led interventions to combat loneliness amongst people who experience mental health difficulties come from a slightly different place than other loneliness interventions. They tend to recognise that there is something meaningfully different about the experiences of those that live mental health difficulty and with distress. Sometimes they are about removing barriers to activities or spaces that are otherwise open to everyone; but often they are about creating and shaping spaces that are apart or at a slight oblique from the wider community. They recognise that making a big show of being welcoming can be as off-putting for some as being a room full of stoney faces not welcoming anyone new. Most people with mental health difficulties understand and feel keenly the cold dread of feeling an outsider and it filters into what makes user-led projects different. Invitations might need to be more explicit; terrors named more explicitly and barriers both to entry and to departure if things get too much lowered. Many of us know what it is to feel disliked for what we are, and try to avoid creating that feeling on others.

Safe spaces

Working on a project about the potential for community business to deliver opportunities and support for people who experience mental health difficulties, one participant named this explicitly. Running a community cafe and arts space by and for people who experience mental health difficulties there was a significant tension between wanting to invite the wider community in and wanting to maintain the project as somewhere specifically for those who experienced mental health. The worry for those that voiced it was that people with mental health difficulties would become marginalised in this safe space in the way they felt marginalised in other spaces outside of it.

Historically, the issue of loneliness and isolation for people who experience mental health difficulties was framed by proxy by two different ideas seeing the problem from the other end of the telescope of lived experience. One was was the idea of integration; the other socialisation. Both have their roots in deinstitutionalisation. One is based on the idea that the problem for people with mental health difficulties is that they have yet to be shuffled back into the deck of cards of everyday life; the other is that they somehow need to be taught to be around other people. Both would see loneliness as a failure of rehabilitation, not as an intense, idiosyncratic emotional experience. The demand of the more radical service user activists of the 70s and 80s was for freedom from the deadening medicalised hand of traditional day services and their low expectations and support for a more open, democratic space where people with mental health difficulties could define for ourselves what we wanted to do and how we might spend time together. With the arrival of the global financial crisis in 2008 and the imposition of policies of austerity, they got their wish, but not quite in the way they might have hoped. ‘Traditional’ day services as places that people could drop in and out of with relatively little pressure evaporated and what was left became oriented towards recovery against targets and outputs and outcomes, as likely to be funded through the adult education budget as through mental health or social care ones.

Day services were an imperfect anchor, but they were an anchor, a place you could go in answer to the question: ‘if I’m lonely and having problems with my mental health, where would I go?’ In theory, recovery colleges as co produced spaces were intended to form a new kind of space for people to come together and meet others, but the extent to which they are actually ‘user-led’ differs from college to college.

Lumpy and messy and real

What continues to exist are user-led groups and organisations who would not necessarily see themselves as ‘interventions’. Some came into being in opposition to traditional services, some came into existence once all of the traditional services had evaporated, some were developed under the wing of larger organisations and staked out their place as something different. Other peer-led organisations and groups tended to work to ‘take the edge off’ the ways in which the mental health system atomised, isolated or otherwise left people experiencing mental health difficulties with unanswered needs. Many have learned to talk the talk of intervention and deliverable and use that as a means to get the cash to do things that bring people together and give them a chance to meet and get to know others. Despite that, National Survivor User Network research reported last March that 221 of its 822 members — most of them user-led groups and all of them smaller, voluntary sector mental health groups in England — had closed since January 2015. During this period, organisations and groups have sprung up that wouldn’t see themselves as either interventions or as ‘user-led organisations’ in the traditional sense.

Often such groups and organisations feel they are working with a blank slate, trying to get something to happen in a landscape where very little is. The initial attempt stave off service closures has for many groups and organisations turned into a battle to create and maintain new things that are less service oriented and more social.

The messy combustion of South East London’s Cooltan Arts tells a story that charts the history of autonomous organisations that looked to bring people together. Growing from a kind of anarchist squat into an arts organisation with a strong record of pulling in funding it was beloved of people who felt they had a home there and was treated with a degree of caution by those who felt they were not welcomed or were not the ‘right kind of service user‘. A change of board, internal issues and an attempt to run arts services funded by personal health and care budgets led to the organisation ceasing trading on 29th June this year.

South London’s Mental Fight Club and its Dragon Cafe is an example of making stuff happen, describing itself as “an informal creative and safe space for people to meet and take part in a range of activities. Everyone who enters The Dragon Café becomes a Patron.” Inkwell Arts in Leeds runs a range of arts related activities and feeds into the Love Art Leeds mental health arts festival. Launchpad in Newcastle has been going for 14 years under the ethos of being ‘canny’; that is decent, friendly, reasonable and open. As they say: “We’re every bit as much a platform to get things to happen as a membership organisation, and will work with and for anyone who’s experienced mental health difficulties. This means that collaboration and co-production (and being user-led and user-run) is at the core of what we do. This could be in relation to: planning/designing MH services, trying to influence policy, delivering training, signposting & giving information, doing research, setting up, running and assisting peer support groups, networking, campaigning or doing interesting, creative and artistic endeavours.”

Hearing Voices Network runs as a set of local groups where the function is to be with others of like mind in the face of world that might discriminate against others.

Another North East group,Men Tell Health, hold ‘speakeasys’ in cafes around Middlesbrough. Talking to the BBC in June, one member Daniel Shaw said “”There’s a weird shared connection you have, and empathetic connection, and that made a big difference for me.” Dan Briggs, their director of services said: “”Sometimes you don’t need an answer. I’m not looking for an answer off someone, I’m looking for someone to go ‘It’s all right to be fed up, it’s all right to feel like that.’” Another member Richi Wells said: “”It’s good when you’ve got a group of people who’ve been through similar or even worse things than yourself and you can just sit there and have a laugh with each other. And all of a sudden someone will say ‘When this happened to me, this is how I dealt with it’.”

Last week I was giving taking part in a session at the Kings Fund’s Annual Conference talking about where we’re at with mental health as a country. Outside, having a vape and looking bereft in the rain I got talking to John Venable of of The Big Communitea. He gave me a card. The card said “Present this card at any of the participating cafes or organisations showing this symbol and receive a hot drink company and support. Check for participating venues at communitea.org.uk”. What an offer! And that’s John’s intervention. It’s running in Selby, Scarborough and Whitby. They did a pay it forward thing on cafe counters to raise money for the cafes. People use their card to get a free hot drink. They train the staff of the places in Mental Health First Aid. People get to know each other, some places offer other activities. John told me about the way people had started whatsapp groups for mutual support, help getting to appointments, freakouts in the wee small hours. Once you can get people knowing each other, then loneliness can begin to ebb away.

Part of our challenge is finding ways that research can capture and understand these vibrant, pragmatic and messy ways of people being together without betraying what they do and spoiling it. A visitor should always take their shoes off at the door if asked.

Earlier this year I was doing work up in Manchester around loneliness with Ambition For Ageing Greater Manchester. Manchester is trying to work out what an ‘Age Friendly’ city might be and how they might make it happen. The Big Communitea feels like the beginnings of what a mental health friendly town or city might be. If an intervention doesn’t make it easier for people to meet and find common ground with each other, how can it hope to end loneliness? I think where user-led interventions can be lacking is the outreach and the reaching of people who really are isolated and lonely. That to me feels where peer working with existing services might be most valuable. We know when people experience the most crises and at which points of transition and change, but we are often still too meek to try to find ways of reaching those people.

Loneliness is about people over time

This year I’ve been doing more writing based on interviews with people. I did a piece talking to people who have spent long periods of time at home alone because of difficulties they were having with their mental health. It’s amazing and intimate interviewing people about thing they might never have spoken to anyone else about in depth to anyone else. There’s one of the people I spoke to that I think about almost every day. She answered my shout out on twitter looking for people to interview. We organised it by direct message:

““You get used to it after a while and you forget that it’s not normal,” she told me. “You see something on the telly when they say ‘I haven’t spoken to anyone all day’ and I think ‘hang on it’s about six weeks since I saw or spoke to anyone’.”

A civil servant by profession, she told me her life was a “series of unfortunate events”. She was signed off sick with long term physical and mental health difficulties two years ago after a period of intense bullying. We had to stop speaking for a moment as she found herself surprised to be close to tears.

“People disappear,” she said. “You text people and you phone them and nobody answers.

“When I have to go into hospital I have to make up a name and address for next of kin because there’s nothing else to put.”

“It’s not a choice,” she said.

“It’s difficult to find a way back. Sleeping, watching telly, messing about on the internet is basically my life. I hate it and I don’t know what to do about it.

“How have I arrived at this point in my life when Stalin, Hitler and serial killers have friends who missed them, how can I not have a single person in the world who’d notice if I’d died tomorrow?” I didn’t know what I could say to help.”

I still don’t. I don’t know her name, or where she lives. But I hope that something happens near her; that someone can reach out and invite her in, Someone who gets it, that being alone doesn’t always have to be an embarrassment.

I think about her most days because I’ve been there.

I hope we can make a future where she never feels lonely again.

@markoneinfour

This speech was delivered on the same day as ‘“Wanting to be special and wanting to be just like everyone else” Young people, mental health and loneliness’