A diagnosis means
- finding out more about and understanding better
- an illness, a problem or a phenomenon.
I think that if you believe that your problems are sufficiently severe, there is no great disadvantage, and a lot to be said, for seeing if you can get a diagnosis.
But it is also true there are a few possible downsides to consider. Given that you are after a better understanding, a wrong diagnosis is probably worse than having none at all. And it has to be understood that diagnosis is never a matter of complete certainty, in the mental health area even more than in (supposedly) straightforward medical matters. Mistakes can be made, and tend to have negative consequences. But so are mistakes about medical diagnoses, having cancer or not, being HIV-positive or not, etc. And even the famed precise medical diagnoses that can use blood tests, X-rays, fMRI scans, and many other tests, always have "confidence intervals" around their diagnoses, and statistical estimations of "false positives and "false negatives". It has to be understood that the mental health field is no different.
Who make diagnoses?
When you see your GP, she or he will often make some kind of diagnosis themselves, not only in the physical, but also in the mental health field. Beyond that, there are psychologists and psychiatrists who tend to make diagnoses, and for some diagnoses there are people specialised in a particular area. Children and adolescents would also generally be seen by specialized practitioners.
The Oxford dictionary defines diagnosis as
- "identification of the nature of an illness or other problem by examination of the symptoms."
- "the distinctive characterization in precise terms of a genus, species, or phenomenon."
So the word is used for the process as well as for the label that often is the outcome of the process.
For at least two generations there have been strong and credible voices expressing doubts about diagnosis in the mental health field, warning against it, or appearing to say that no diagnoses should be made. I first heard this view in the 1960s, when I lived in the Netherlands, and have followed the debate ever since. Overall, in all these decades, I have not been impressed by the critics of diagnosis. On balance, I believe that a world with diagnoses is a better world for people who have problems with living or problems with their "mental health" (however defined). In the 1960s there were Erving Goffman with his book Stigma, RD Laing, and the anti-psychiatry movement. Today there are other names, but many of the arguments haven't changed.
In this blog I want to review some of these arguments, and put my brief counter-views alongside them.
It is said that a diagnosis runs the risk of causing stigma, or the person labelled might be stigmatised. I agree that stigma is bad (motherhood statement - so is bullying, domestic violence, torture, many things), but I don't think diagnosis causes stigma. Words exist, and new words are created every day. If they do damage, then the damage is caused by the people using them, and by the way in which they use them. If in a particular country and time there are negative attitudes in the population against people with learning disability, then that is a problem, and needs to be dealt with as such. The availability or choice of words does not change this.
For learning disabilities I once researched it. During the 20th century in the UK there has been a succession of (at least) five different labels that were officially recommended and used in public institutions. There may be a sixth on its way. I simply cannot believe that the stigma, or in general the well-being of the people concerned, has in any way been positively influenced by this ongoing series of changes. Same with 'paraphilia' taking over from 'perversion', or with the abandonment in most quarters of 'hysteria' as a diagnosis.
An HIV-positive or AIDS diagnosis stigmatises, even today, but much less than it did initially. This has been achieved by working on the stigma, not by changing the word, and been fairly successful. This also shows that not only mental health labels can be used to stereotype people - racial, ethnic, religion-based designations, and many others, can be used in an offensive way. The words "gay" and "queer" have been contested and to some extent reconquered from their earlier negatively-laden meanings.
It is also said that labels, diagnostic or not, will stereotype people, objectify them, deprive them of agency, or become self-fulfilling prophecies. I think these dangers are there, but they only happen due to nefarious intent of the maker of the diagnosis and / or with the co-operation of the person who is diagnosed. Words are powerful, even have magic power - as Freud once wrote - , but this can be true for non-diagnostic words too. Despite the dangers, I cannot see how this argument of another form of misuse of diagnostic words, can justify attempting to abolish diagnosis altogether. The advantages and uses of diagnosis are too natural, and too considerable.
Understanding and analysis
The Oxford dictionary states that diagnosis is about identification or characterization. The purpose of this is a better understanding or analysis of something that is wrong, a problem, a disease, or simply an identification. If this does not suit or work, a word will be abandoned and cease to be used. But it is not the word that needs to be discarded as such; as long as it is there, it will be a reminder and an incentive to explore its meaning, its definition and allow people to argue about the phenomenon it tries to describe. This is how science and language progress. The word witch is rarely used now in its medieval sense, as most people believe that it does not correspond to anything that they relate to.
Power and its abuse
As many analysts and observers have pointed out in the last 70 years, language is powerful, can be used and misused, and the usage of power in society, both group power and more general political or state power, will often be facilitated by using words. If a particular profession has the monopoly of making diagnoses, i.e. handing out certain powerful labels, this gives them power.
Judges can declare people to be convicted criminals, the church used to be able to declare people witches, and HIV / AIDS diagnoses are made by medical people. Psychiatrists exercise some power by handing out psychiatric diagnoses. Some of this power has been used badly; some of it may be necessary for the functioning of more advanced countries. All are worth questioning, but I don't think that a realistic goal will be to abolish all diagnostic labels. Forbidding words is a doubtful practice.
Moving to the mental health field, where this battle is more visible than in many other areas, I don't see things fundamentally differently. Diagnostic labels have come and gone. It is often said that the labels are there to make money for the dastardly pharmaceutical industry; though private commercially oriented companies will try to influence whatever area of human activity they can, in order to make money, I don't think the area of diagnosis is noticeably vulnerable or particularly fraught. The great majority of big diagnostic categories used now has been around for a long time, mostly since the end of the 19th century. Some have been renamed a number of times, some have not. But they always were contested, and their introduction was made at a time that the pharma industry was far too small to be able to be a significant influence.
No abolition but replacement
What has struck me in some of the major antagonists of the DSM classification system in the UK, is that after saying that they are against diagnosis, they tend to come out not with the abolishing of all labelling, but with a proposal to replace the words of one system (say DSM, the American Diagnostic and Statistical Manual of Mental Disorders) by another system, which happens to be their preferred set of words. Prof. Peter Kinderman wants to use a list of "problem" labels, probably running into the 100s, and impose this on the NHS. Lucy Johnstone wants to replace DSM by having practitioners make "formulations" and use "constructs". They still want to use words to describe aspects of what is the matter with people; just different words. And as an anarchy with everyone using their own words would not work, a systematic approach is necessary.
The origins of DSM and ICD
Before WW II there was no DSM. Every psychiatric hospital had their own system. This meant complete anarchy, an inability when people moved from one hospital to the other to describe clearly how there problems were understood in the earlier one, and great difficulties in capturing larger-scale statistics or do research, as people did not know what others were meaning when they used the same or similar words. WW II and the aftermath meant that in a country like the USA this was seen as an untenable situation, and this is when the first version of DSM was borne, based on a prototype that had been used in the army.
There was a wish in the rest of the world not to be slavishly following American psychiatrists, so an alternative system using the initials ICD (for International Statistical Classification of Diseases and Related Health Problems) was developed, and the World Health Organization (WHO) put in charge of it. Over time DSM and ICD are being kept reasonably closely in step; whenever one changes, the other makes a similar round of modifications.
The combined impact of the DSM and ICD systems is very significant. Knowingly or not, there is no country, organisation or profession that is remotely as influential as these two in influencing the terminology that is being used by mental health professionals.
Changes in DSM and ICD
A number of the changes in DSM have been hard fought for, and were usually immediately, or after some delay, greeted with delight and adopted world-wide.
- The formal abandonment of homosexuality as a form of pathology was a clear signal of major change in the Western world.
- PTSD (post-traumatic stress disorder) only became such an influential diagnosis after DSM adopted it.
- Autism, Asperger's syndrome, ADHD, and multiple personality disorder have followed the same path.
There are many things that can be said about these diagnoses, but the developments and the arguments around them have to do with real developments in the mental health professions, in education, and amongst service users. They were not introduced by some ivory-tower experts in isolation deciding to "coin" a few new words, put them into their book, and impose them. Even with the great influence of DSM and ICD that would not work, and has not worked. If the wider world, and the (international) community of professionals, believe that a particular formulation is not useful, is corrupt, or harms patients, it will not be adopted long-term, DSM / ICD or not.
I am personally much more familiar with people who have struggled for years, and finally benefited greatly from a clear discovery that a diagnosis covered by a particular DSM or ICD designation seems to be a good fit. This would then give a good explanation of that person's problems, and often justify a particular plan for treatment, involving medication, social support, or social benefits.
We cannot do without DSM and ICD
I do not think a modern country could possibly run a mental health system, whether mainly public or mainly private, without a systematic and common language used to classify and describe people's problems. Overall the systems we have, DSM and ICD, are in touch with and follow latest opinion (and no doubt latest fashion, too).
To have regular and vigorous debate about the value and exact definition of the terms is how progress is made, and keeps the committees making the decisions on their toes. The idea to abolish them would be absurd. If this were tried, they soon would be replaced by initially much inferior systems, making life worse rather than better.