What does it actually mean when a doctor tells you that you have ‘Depression’? If two people are diagnosed with ‘General Anxiety Disorder’ does that mean they are experiencing the same feelings? Why do people’s mental health diagnoses change so often? Tessa* is a teacher who has been fighting her way through the NHS’s mental health system for most of her life, and Paul* is a psychiatric triage nurse who has been working in the NHS for decades. I talked to both of them to better answer some of these questions and understand the way the NHS system uses labels like ‘Depression’ and ‘General Anxiety Disorder’.
When I asked Tessa about her experience with mental health labels she emphasised the perpetual state of confusion the system left her in.
“I feel so confused about my mental health, about what all the labels are and all the categories are. Hardly anything was ever explained to me and I don’t feel like we’ve ever reached a satisfactory conclusion of what I’ve got.
I feel like I’ve got bits of several disorders, so many it scares me, and no one has helped me with the joining up of it. I’m wandering around without a map. What I want more than anything would be a joined up approach. My experience has been so fragmented”
Looking at the research, Tessa’s confusion is hardly surprising. One extensive review suggests that there is no consistent data to support the current categorization of many mental health disorders, such as mood disorders (like depression), anxiety disorders and eating disorders (Haslam et al 2012, Psychological Medicine). This suggests that with depression, for example, there is no one symptom or cause that is the same for all people labelled with depression. In other words, whilst two people might have been told by their GP that they have depression, there is not consistent evidence that they are suffering from the same illness at all.
If the research regarding mental health categories is so mixed, and the experience so distressing for patients, then what role do these labels actually play? To try and understand I asked Paul.
“In psychiatry we don’t really talk about illnesses, we talk about less precise conceptual things like syndromes or disorders. These are just bits of shorthand, and they aren’t even very good bits of shorthand.
The thing I always want to immediately say is that [the labels] are not actually things. They don’t really describe stuff in the actual world terribly precisely, and they change all the time.”
To help me understand, Paul draws an analogy to Botany. Botany is essentially a way of dividing up natural things into categories to help us make sense of them. Plants didn’t actually evolve in distinct categories, we just group them together in certain ways that are useful to us and help us make sense of the world. Whilst we might think that two flowers are related because they appear very similar, new advances in DNA technology might tell us that they actually belong to two very different evolutionary trees. Analogously, recent research in psychiatry suggests that symptoms of mental health disorders don’t actually group together because of any one underlying reason, but we artificially group them together into disorders such as ‘depression’ in order to make sense of them and help people access the right treatment. In a similar way to how advances in DNA technology change the use of botanical labels, advances in psychiatric research lead to a change of the use of mental health labels and categorisation. This means that the labels used to understand patients’ experiences often change throughout their lifetime, and different doctors and nurses might disagree on which the most useful label is.
Paul pointed out that psychiatry changes rapidly:
“Until 1980, we didn’t talk about phobic anxiety or panic attacks, there was just anxiety. So it feels to me that every time someone uses the term panic attack, or OCD, or whatever, they are thinking very ahistorically. They forget that these aren’t things that have always been there like rocks and trees, they are our more recent attempts to make sense of ourselves.”
One major source of influence on mental health labels is the pharmaceutical industry.
“Psychiatry has an arms length relationship with the pharmaceutical companies because they have a vested interest in selling their drugs. They’ve helped drive the idea that different groups of medications are better for some things than others.
In the 1950s when they invented the drugs that we now think of as antidepressants, they didn’t know what to market them as. At that time, no one would ever dream of prescribing a medicine for depression since it wasn’t a biological thing, it was a psychological thing. But the drug companies have the money to fund research showing that the drugs are effective, and the power to pressure GPs into prescribing these new drugs.
It’s a super complicated process that cuts both ways. Other people with vested interests try to determine what the subject matter of psychiatry is, not because they are diagnosing people, but because they have a product to sell.”
So according to Paul, these labels are practical entities. They provide structure to the system but aren’t perfect and are affected by outside influence. Yet Tessa pointed out that their use can appear overly reductionist and leave patients feeling neglected and dehumanized. She expressed her frustration at a seemingly haphazard use of labelling in the NHS mental health system.
“[The psychiatrist] said ‘Well I’ve got to put something on my form because of the computer so I’m going to put depression’, and I just laughed at him openly…. That just confirmed my profound lack of trust in these professionals”.
As well as seeming meaningless, Tessa points out that these labels also often lead to stigma and shame.
“Having post-natal depression was the only time in my life that I felt I had a mental health issue that was not stigmatized. Postnatal depression is culturally acceptable because it’s short term, it’s got a physical reason and it’s understandable. The rest of my life I felt my mental health problems were shameful.”
If these labels are inaccurate, changeable, and even potentially harmful, then why do we continue to use them? Paul explains that in an ideal setting, they should be much more than a code for a computer system or a source of stigma, they represent underlying structures which help to make sense of a patient’s experience.
“They are good because it leads to you being able to say to patients, ‘OK this may seem chaotic to you, but this kind of makes sense to me’.
You have 8 minutes to make sense of the person’s story and the structure [of the mental health categorization system] allows you to talk about the person’s experience and to negotiate what you’re going to do about their distress. When you talk to patients as a clinician and try to filter their huge story into something that’s manageable in terms of treatment, the thing that you try to manage all that story into is a diagnostic picture.
It’s really easy to use [labels] as a skeleton on which to hang all the sinews and muscles of the persons’ story, so you can arrive at some acceptable way of making sense of it that you can feed back to the patient. These labels are heuristic things.”
At their best, labels lead to understanding, treatment and ultimately a reduction of individuals’ distress. At their worst, they bring stigma, shame and confusion. How should these labels be used in a way that encompasses the heuristic use that Paul values, without ending up causing the type of confusion and distress that Tessa has suffered?
Firstly, mental health professionals should discuss the imperfection of mental health labels and the profoundly personal nature of each person’s experience. If patients had a clearer understanding of the intended use of these labels, that of useful bits of shorthand to guide treatment, they may feel less confused by the system and less misunderstood by the professionals they interact with. In practice, this might mean focusing more on the patients’ unique symptoms, rather than treating ‘Depression’ (or any other mental health diagnosis) as a one-size-fits-all label to describe the experience of each person it’s applied to. Ideally a label facilitates the understanding of a person’s mental health problem, but does not necessarily define it.
Secondly, and relatedly, a genuinely good thing about labelling people with mental health disorders should be that it leads to the appropriate treatment. Acknowledging the imprecise nature of labels, and focusing on the experience of the individual, should open up the possibility of more personalized treatment. Yet the chronic underfunding of the NHS’ mental health system means that this is not a realistic outcome for the majority of people. Yet after years of avoiding medication, Tessa told me she feels she has been driven to antidepressants because of the lack of other services available.The one really positive experience she had with the NHS mental health services was with a counselor who spent a number of months with her.
“She was someone to talk to, someone to listen. She was the only person I had anything like an ongoing supportive relationship with. Instead of feeling like there wasn’t time for me, I felt that someone found a way to make time for me.”
Unfortunately, these kinds of personalised services are not available to most people most of the time. There’s a way to use mental health labels constructively, but without sufficient funding we cannot get there.
*Neither of these are their real names