Does How We Talk About Mental Health Change How We Experience It?

In the book “Losing Our Minds: The Challenge of Defining Mental Illness,” psychologist Lucy Foulkes explores the difficulty of naming and defining mental illness.

Jan 25 2022, 2:00pm

Within half an hour of scrolling through my For You Page on TikTok, I can see videos about ADHD, autism, OCD, trauma, attachment styles, emotionally immature parents, and high-functioning anxiety. 

While my FYP might be biased to include mental health content, it’s hardly the only example of this kind of jargon leaving the therapist’s couch and escaping out into less clinical settings. 

As Katy Waldman wrote in the New Yorker article “The Rise of Therapy Speak,” “We ‘just want to name’ a dynamic. We joke about our coping mechanisms, codependent relationships, and avoidant attachment styles…We diagnose and receive diagnoses: O.C.D., A.D.H.D., generalized anxiety disorder, depression. We’re enmeshed, fragile.”

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This has pros and cons: We’re talking more about mental health than ever, potentially reducing stigma around being diagnosed with any number of conditions. We’re also finding others who have felt just like us, so that we don’t feel so alone.

But with this ubiquity has come questions about how stretchy these mental health terms can and should be. What happens when they are extended to be used by everyone, and for everything? One TikTok garnered criticism for claiming that excessive childhood reading was a sign of "dissociation” and childhood trauma. As Eleanor Cummins wrote in the Atlantic, “trauma has come to signify a range of injuries so broad that the term verges on meaninglessness.” 

Accounts on TikTok, like that of psychologist Inna Kanevsky, have had to regularly fact-check others’ mental health content, and reign the use of these terms in. As Rebecca Jennings wrote in Vox, “It basically seems like there are two types of people: those who tend to appreciate and identify with this kind of internet diagnosis — ‘[X] behavior is actually a trauma response!’ does legitimately make sense for some people and helps them live a happier life — and those who find it not just annoying but potentially harmful, stigmatizing, and unscientific.” 

What’s really at the heart of these debates is taxonomy and semantics. How should we categorize mental disorders? When does emotional distress cross some fuzzy and undefined border to become a clinical condition that needs treatment? What words should we use to refer to all of these experiences, and what meaning do our words impart into those experiences? 

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In a new book, out today, called Losing Our Minds: The Challenge of Defining Mental Illness, Lucy Foulkes, a psychologist and honorary lecturer at University College London, explores the chasm between the way we talk about mental illness and what we know about it. 

In a cultural atmosphere that can be both critical and grateful of the proliferation of mental health terminology, Motherboard talked with Foulkes about the ways we talk about mental health, and how they could be interfering with our understanding. 

This interview has been lightly edited for length and clarity. 

Motherboard: We’re talking about mental health more than ever, and in part it’s certainly helping to destigmatize it. But you say early on in the book how all this talking hasn’t necessarily equated to a greater public understanding of mental illness. How can that be?
Lucy Foulkes: It seems like the opposite should be happening, right? The more we talk about it, the more we should understand it. I think it's the nature of mental health and mental illness itself. It's not a straightforward thing to try and understand. 

The temptation with these campaigns, especially social media campaigns, is to simplify and make these things easy. Mental health as a topic is just inherently complicated, and there's so many different viewpoints on it. It's not like one is right and the other is wrong. 

OCD is a great example because we've sort of tossed that term out into the public consciousness without a depth of understanding and what happens is there’s a misunderstanding about what that term means. 

This sort of semi-awareness of it has even made matters worse for people who really do have it. Before there wasn't any understanding at all, and now there's misunderstanding. OCD is a good example of a problem where just putting a word out into the public consciousness is not useful because it kind of takes on a life of its own.

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Because when so many people use it colloquially, it changes what the meaning is?
And that [meaning] just perpetuates. I live in a block of flats and we have a WhatsApp group and someone was like, “My OCD doesn't like the way the packages are delivered downstairs.” 

That can be even more alienating than people not using the word at all. Because you perpetuate the idea that OCD is about neatness and tidiness. And the people who really do have the disorder remain out in the cold. They remain poorly understood, and the whole point of all this awareness raising was surely to help people with disorders

A lot of people have heard about the DSM, which is the handbook of mental health diagnoses. There’s been a criticism that the diagnoses in there are made up, and that the DSM even changes every few years with new definitions and disorders. But when I went to get my own diagnosis of OCD, for example, it was so helpful to me to have a word to name what I was going through. How can we think about these labels: Should we care about protecting them? Are they even accurate, and why do we need them?
I think we do need a categorization system, even though it's flawed. I'm okay with stating the fact that it is flawed, but it should still exist. There are very practical reasons why we need to put boundaries around sets of symptoms and come up with thresholds and get some names.

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Particularly in America you often need to meet certain criteria to get treatment or to be covered by your insurance. Then there’s practical reasons like, if you're going to conduct research on OCD, then you need to gather a group of participants who have OCD. 

Even though it's imperfect and the place where those lines have been drawn are not biological realities, you still need to place the line somewhere. You need to make a decision about the threshold at which you're going to say, these groups of people have a shared problem.

The second thing that you bring up is for the sufferer themselves. There's movements in the UK and in the US to get rid of the whole notion of psychiatric diagnosis. I'm sympathetic to some aspects of that, but I also know that lots of people do find the concept of having a name really useful. Sometimes they're not, but sometimes they really are, particularly in terms of making sense of suffering.

One concern about the misuse of these labels is that they might pathologize regular levels of emotional distress—that any negative emotion that people feel could be sort turned into a mental illness. You wrote about something called “concept creep,” can you explain what that is?
I think trauma is a very nice example. The more you shift these boundaries towards common normative experiences, a concept that really should be saved for the more extreme end of things gradually leaks down into more and more experiences. 

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That is a problem which really motivated me to write the book because my concern is that the more there is concept creep, two issues happen: Those terms lose meaning and value for people who really need them. And at the milder end of the spectrum you cause unnecessary worry by making people use these concepts as part of their identity and their experience in a way that's actually not useful.

I'm sympathetic to the problem, which is how can we find the right place to put that line so that we appropriately capture the people who really would benefit from intervention. If you set [the bar] too high, you miss people who need help. Set it too low, and you medicate too many people.

It's such an interesting philosophical question: At what point can you say usefully that a disorder might have begun, and we should call it that and we should treat it as such without over-pathologizing?

It ties into what the philosopher Ian Hacking called the “looping effect.” Can you explain how overusing these diagnoses might influence how we understand mental disorders on a larger scale?
I was really fascinated by this idea that once you give something a name, like binge eating disorder or social anxiety disorder for example, and you label a person with that name, then that name and that concept kind of becomes a real entity in a way that it wasn't before.

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People start altering their self concept and they start altering that behavior. If someone labels themselves as having social anxiety disorder, they might think, “Oh, I can't do that presentation because of my social anxiety disorder.” 

Ian Hacking's “looping effects” idea is that not only does that change the person, but then the person goes to professionals—the academics and the clinicians—and influences those professionals in the way they think about the disorder. 

For example, binge eating disorder, the more people that you label with that term, they'll go and read about it themselves on the internet and then they turn up at the doctor and say, “I have binge eating disorder.” And that informs the way the professional thinks about the disorder. 

Through this looping effect between professional and patient, this concept of binge eating disorder becomes a real thing in a way that it wasn't before. And that’s not to say binge eating doesn't exist or that people don’t have incredibly problematic relationships with binge eating. It’s more that at some point we decide to put a boundary around it and call it a disorder. 

I was also intrigued by a theory you wrote about that posed the question: Maybe there's only one mental illness and we're all just at a different placement on this spectrum or continuum of a global experience of distress. Did that resonate with you?
I think it’s an interesting reminder that these boundaries that we've drawn around different disorders and the names that we've given them are man made. It's useful to learn how much they all overlap. 

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For example, difficulties with emotion regulation crop up across the board. Things you might traditionally think are associated with one disorder, such as having hallucinations and delusions are not just confined to psychotic disorders like schizophrenia. They can crop up in other disorders as well. 

It's a reminder of the fallibility of language in the categorization system that we've used. It's not random. A lot of effort has gone into it, but it's flawed. 

And it doesn’t mean that the experiences are made up, but just the way we put them into different categories and understand them is guided by human decision making.
Exactly. And you'll often find this played out by people who have mental health problems—they often cycle through several different diagnoses. 

They’ve had bipolar disorder, schizoaffective disorder, schizophrenia, or major depression. That's not to say that the symptoms of the distress and the suffering are not real, but just a reminder that the labeling process is imperfect. 

Have you spent any time on mental health TikTok?
[Laughs] It does come up on my For You Page. It's oddly hypnotic.

I find it to be a microcosm of all of these issues because it's raising awareness on the one hand and providing some really good information. But then it’s also been criticized for pathologizing everything.
The more we talk about mental health, it's obviously in many respects a good thing. But at the same time, there's been this collateral damage. 

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You see both on TikTok. How comforting to be able to see someone else have a similar experience to you, and to know that it has a name. But at the same time, too many people desperate to understand themselves and their experience are kind of clinging on to labels that perhaps they shouldn't. 

How can we understand what mental illnesses are at all? The term biopsychosocial has been used to posit that mental disorders are influenced by biological, psychological, and social processes. You wrote about how something called “network theory” is more appealing to you—are there similarities there?
The network model is biopsychosocial in spirit in that it recognizes that there is not one level of explanation of a mental illness. Really what's going on is that mental illness arises because of a network of symptoms that can trigger and cause and maintain each other.

We don't need to have an argument about whether the cause of mental illness is biological, social, or psychological. It's always a little bit of everything, and they interact with each other as a kind of interactive web. 

We don't need to be on two warring sides about whether it's purely biological or purely environmental, because all the evidence to date tells us it's a bit of both. 

Throughout the book, you wrote about your personal experience with depression. As somebody who became a mental health professional and has that lived experience, do those roles inform your knowledge about yourself in different ways? Being a clinician writing this book, versus a patient?
I was sort of reluctant to mention my own experience in the book, and in a way I still feel very private about it. But I felt a responsibility to the reader to include it because I wanted them to know that I wasn't just talking about this from an academic perspective. I really get it.

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It was a useful exercise writing the book because it did make me explore to what extent I’d had an illness, versus a response to what was happening to me at the time.

I hadn’t yet been through that exploration process. I personally still find it useful to see my own experiences as an illness or disorder. For me, it was so debilitating, so out of proportion to what was going on, and also ultimately responsive to treatment. 

The other thing I’ve found in terms of being a mental health professional is realizing that when I have difficulties now, it rarely meets criteria for depression or generalized anxiety disorder. 

That's actually extremely helpful in terms of not becoming unwell again. This is partly why I'm so motivated to try and share the message that not everything is a disorder, because framing it like that can actually trigger the very disorder you’re trying to avoid. 

In Sarah Schulman’s book, Conflict Is Not Abuse, she argues that conflicts can get elevated and called abuse, in part, because then they get paid extra attention to. Sometimes I think about this in terms of emotional distress: it can be escalated out of a desire to receive care and help. But emotional distress is distressing, it always is. Perhaps it doesn’t have to be a mental illness in order to get care and attention from others, even for emotional distress that may not be a clinical disorder.
I think increasingly now the more we talk about mental health and illness, the more people do feel [their distress] needs that name in order to be listened to. Part of the problem is that psychological pain that falls beneath that threshold is not taken seriously, like it has to have that name in order for people to be listened to. 

But in this effort to raise awareness about very real phenomena, we've ended up using that language to describe everything, and in doing so, devalued that word altogether so that still no one is heard or understood.

Follow Shayla Love on Twitter.

Tagged:

mental illness, mental health, therapy, Losing Our Minds

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