‘That’s not about money, that's about basic respect and compassion’

Around the paperback launch of her book 'What Mental Illness Really Is (and What It Isn’t)', Lucy Foulkes shares her thoughts with our editor Jon Sutton.

Your title ‘What mental illness really is (and what it isn’t)’ is a pretty strident opening, given that the very next thing the reader encounters is a quote from Nathan Filer pointing out that there is no uncontroversial language when talking about mental illness – and that includes the phrase mental illness.

This is a fair point. With both the title and the Filer quote, I was trying to get across two things: first, defining mental illness is controversial, to the point where some people think you should never call these experiences ‘illnesses’. And second, that despite this controversy, I personally think illness terminology is useful and necessary sometimes, for at least some people. So my stance is that we do need to maintain the notion of mental illness, and try to define and capture it, even though it's messy and controversial sometimes. You need the whole book to unpack my thoughts on all that – so I can see why the title and opener seem to clash.

You begin by noting a significant cultural shift, a presence, a popular conversation around mental health. What do you think prompted this? Do you really put it down to the Time to Change campaign, or did that just land at a lucky time for other reasons?

Time to Change wasn't the first ever campaign to raise awareness about mental health. Mind ran one back in the 1970's, for example, and there have been others since then. So the shift that started happening about 10 years ago wasn't purely down to the Time to Change campaign, no. 

There were other reasons for the attitude change. The rise of social media giving everyone a platform to share personal aspects of themselves, for example, or the trend for public figures to open up about vulnerabilities. Or the launch of NHS IAPT service in 2008, designed to make treatment for depression and anxiety more accessible. I suspect all of these fed off each other, gradually creating a context where it was more normalised and more encouraged to talk about your mental health. But Time to Change was a very clearly visible, public-facing attempt to change attitudes.

I think you’d say the public conversation around mental illness has progressed considerably over the past 20 years. Would you say the same for the professional conversation? 

I think there have always been professional disagreements about this topic, and I suspect there always will be. People disagree about what we should call mental 'illness', if we should ever use that term, and what the causes are, and where the treatment focus should be. I think that’s understandable for such a complex topic, especially when people have different personal experience and also training in very different disciplines. There are also professional reputations at stake – once you establish a career understanding and researching ‘mental illness’ in one way, it’s not easy, or necessary actually, to change your way of thinking. Are these divisions any better or worse than they were 20 years ago? I don’t know. I think it’s always been quite contentious in some corners. 

In the book you praise Denny Borsboom’s explanation of mental illness as a network, a constellation of properties, moving beyond the simplistic ‘individual vulnerability vs external factors’ narrative.

Yes, I like Borsboom's network theory partly for this reason – that we don't need to privilege one level of explanation over the other. Biological, psychological and environmental factors all play a role in the development and maintenance of mental illness. But I also like his idea of mental illness being a network of symptoms that becomes self-sustaining, i.e. that the initial trigger for a disorder, like work stress for example, might subside, but it's too late by then – symptoms like insomnia and low mood and anxiety just carry on sustaining each other. That makes a lot of sense to me, in terms of what we know academically but also from what I've seen with people close to me who have been unwell.

Has any of the reaction to the book, from psychologists or otherwise, surprised you?

I have just been surprised by how nice people have been. Mental health is such a sensitive topic to write about, and it's impossible to keep everyone happy. But I have had a lot of lovely emails from mental health professionals saying thank you for writing the book and that it resonated with them. Far more so than I could have imagined. I'm not remotely interested in being controversial, I really just wanted to write a balanced exploration of this complicated topic, so I hope I have achieved that.

You’ve written about awareness campaigns and their limitations for us… perhaps summed up by ‘We know mental illness exists, we know it’s widespread, but few people know what any of this really means’, or what to do about it. Do you think that info, those realistic depictions of mental illness, are still simply not out there… or that people are wilfully deaf to them?

Yes this is a really good point. It's both. I think partly it’s lack of information, but partly that the good information that does exist isn’t getting to the people who need to see it the most. There are still plenty of people who dismiss the whole concept of mental health problems, who scorn those who talk about them... How do we get the right information to them? I really don't know. But the same informed people retweeting the same well-intended hashtags isn't going to do it. 

A focus of the book is young people. Why?

Partly because it's my area of research expertise, partly because a lot of mental illness begins in childhood and adolescence, and partly because this is where so much of the public conversation is focused. I am particularly interested in and worried about how the new mental health conversation is affecting this age group, whether young people are self-diagnosing or overpathologising in an unhelpful way. I'm starting some new research projects to look at this more systematically now. 

You write of ‘linguistic inflation’, and the tendency – perhaps particularly amongst younger people – to self-identify as having a mental illness. Do you have advice for parents and others on how to respond to that?

I'm often asked if I have advice for parents, and it's tricky because a) I don't study parenting as my research area and b) I'm not a parent myself. But I would think that it's helpful to familiarise young people with the idea that mental health problems exist on a spectrum, and that transient or milder forms of distress are not necessarily problems or illnesses, even though these experiences can feel awful. I think there are ways of validating young people's distress so they don't feel they need a label for it in order to be believed or heard. In other words this isn't about saying 'pull your socks up, it's not a full-blown anxiety disorder' – but rather about recognising distress and providing support. But of course some mental health problems in young people really are serious problems, ones that might require external and possibly long-term help – and parents need to be aware of this too. It's not an easy task for them.

I like that you refer to the relationship of social media with mental health as ‘a double-edged sword’. I have found that ‘it’s a double-edged sword’ tends to be an appropriate contribution to any conversation about Psychology, or indeed most aspects of life.

Yes pretty much everything is a double-edged sword, I think. I advocate for the idea that almost nothing in life is black and white. The vast majority of experiences are partly good and partly bad in parallel, and things that seem transparently 'bad' on the surface are often more nuanced than that. Not everything, but a lot of stuff, for sure. Certainly in psychology as you say. And I'm happy inhabiting that grey area.

If you were in charge of all mental health provision in the UK, what would be the first thing you changed?

My first thought here was faster access to psychological therapy. Evidence-based, long-term where necessary, and delivered by someone who knows what they're doing. But that ain't cheap. For a cheaper solution, I'd think about training staff across mental health services to better validate and understand people's distress, even if they don't have a magic wand to solve it. Some professionals are excellent at this, of course. But I'm involved in a study at the moment that shows how often this goes wrong – how vulnerable people at their lowest point are being disbelieved and ignored when they try and get help. That's not about money, that's about basic respect and compassion. And it's shocking to see and hear what happens when that goes wrong.

So that’s where the hope lies? 

A lot of distress could be reduced if more people with mental health problems were believed and felt understood. But the challenge is how we get others to understand, people who have not necessarily been touched by mental illness themselves, and who have been brought up in an environment that dismisses or stigmatises it. It is a difficult cognitive task to understand that someone else's inner experience differs to your own, and I think some people fundamentally cannot wrap their head around the idea of, say, pathological anxiety if they haven’t seen or experienced it themselves. And yet these are the people we really need to reach, somehow, to convince them that these experiences are real and need everyone's understanding and support.

There are loads of other things too, of course. Research-wise, we need to continue to make improvements across the board. It would be amazing if we could reach the point where we had truly effective medications, for example. That would change everything.

Are you finding that your writing sits well alongside your work as a psychologist?

Yes, because increasingly my role in academic projects is to help formulate ideas and then write about them, rather than collecting and analysing data. I'm doing fewer experimental studies now – now it's more qualitative work and writing theory/opinion pieces. So for me, both roles involve thinking and writing about mental health, it's just that the audience differs: other academics vs lay audiences. Sometimes I write about exactly the same concepts, but for the two different audiences. It's like translating between two different languages, which I quite enjoy as a mental challenge.

So many of the best popular science books now weave in personal experience, as yours does. Can you imagine writing books without that aspect? Will your next book on adolescent memories feature some juicy teenage diaries?

I could easily have written Losing Our Minds without mentioning my personal experience. Sometimes I wish I hadn't written about it because I feel deeply private about it. It's hard to remember that time, and I'm certainly not a poster girl for how you solve these problems. But in the end I wanted to let the reader know, to tell them that I wasn't coming at this topic from an entirely detached, academic perspective. I think people appreciate that – that's what they've told me, at least.

As for the next book – I don't know. It is a real art to write well about personal experience. The problem is that, as the writer, it's fascinating to write about yourself. But unless something exceptional happened to you, or you can write about the ordinary in a really compelling, beautiful way, it's just not that interesting for the reader. It comes back to what I was saying about stepping into someone else's perspective, in fact. As a writer, you have to respect the reader and consider what they, not you, need to see on the page. 

So I'm still mulling over whether to include details about my own adolescence in the next book. I'm considering whether to write about one specific romantic relationship, which was in many ways the defining story of my adolescence. But can I write about that in a way that's interesting to other people, to strangers who didn't know either of us? I don't know. Ask me in a few months' time.

- Lucy Foulkes is a senior research fellow at the Anna Freud National Centre for Children and Families and an honorary lecturer in psychology at University College London. What Mental Illness Really Is (and What it Isn’t) is out in paperback on 21 April. 

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