The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill

Professor Dimsdale et al remarked: “Frances complains that the DSM 5criteria will be “too loose.” It is worth pointing out that the DSM IV criteria for “Undifferentiated Somatoform Disorder” yielded higher estimates of the population at risk than do the criteria for DSM 5.”

I find it odd that Professor Dimsdale et al would make the argument that a definition in DSM IV yielded higher estimates of the population at risk. It seems to me like an odd piece of point-scoring when on such a serious matter surely the important thing is to identify the EXACT population at risk. It also reminds me of primum non nocere; ‘first, do no harm’. Perhaps the concept of non-maleficence seems so obvious that it is easy to overlook its profundity.

It is a concept that recognises the essential humanity of the physician. It reminds those that work to reduce suffering, that whilst they may at times feel powerless to help, it is their right to feel that way and furthermore it is their duty to accept the burden of discomfort that might bring.

The principal allows that physicians can feel impatient or get angry; they might be ambitious or greedy, they might be ill themselves – maybe with something more serious than their patient. They might have seen a terribly ill patient that they know is dying, then see another patient with a sore-throat. They might wonder about what and who is really important. They might at times, not be a ‘nice person’. A sound precept can help them to avoid making mistakes when human nature could impair their professionalism.

Doing nothing and not being able to give a diagnosis or explanation might be difficult, but with a little experience doctors find a way to manage this basic fact of the limitations of medicine. A doctor that accepts and admits not knowing could be far more helpful in the long-run than one that gives a false explanation or a false diagnosis; or worse still (IMO) a false diagnosis that could predictably impede correct diagnosis if and when that becomes possible.

When Melanie Klein learned of the then, new concept of ‘counter-transference’ she recognised that it represented a temptation for psychotherapists to attribute their own psychological problems to their client. SSD could create a similar problem for physicians. Making a loose diagnosis available that could officially validate the physician’s role whilst at the same time invalidating the patient is terribly risky.

Part of the beauty of, ‘first, do no harm’, is that when the physician is unable to help there and then, they remain a physician. Their role is not invalidated. If their ego has taken a knock, then so be it, it is easily cured with humility which you can get without a prescription.

My impression from reading the comments of some doctors regarding the SSD diagnosis is that they recognise that rather than being reliable criterion that they can safely follow; it actually represents a temptation to allow human weakness to influence their practice of medicine. The only good thing about SSD that I can see, is that the criteria are so loose that doctors will probably recognise that they make this diagnosis not just at their patient’s peril, but their own as well.

I have worked as a clinical psychologist for over 30 years and as a specialist within NHS cancer care for over 20 years. I object to the new SSD diagnosis on so many levels that it is hard to know where to begin. For starters, once something has a label it begins to be thought of as a real ‘thing’, as if it exists in nature like a bacterial disease or a broken bone. Unlike cancer, however, SSD does not exist in nature; it is a social construction which depends entirely upon a subjective judgment. This would not matter if psychiatric diagnoses did not stigmatise and do damage. Too often I have met people who believe their cancer was diagnosed late because their physical symptoms had been dismissed as “all in the mind”, probably because somewhere in their medical notes they were once given the diagnosis of depression or anxiety disorder. A diagnosis of mental illness sticks to medical notes like glue and influences the perceptions of all who subsequently read them.

Dimsdale, Sharpe and Creed in their response to Frances (Rapid Response, 20th March) say that “the goal of the DSM is to accurately describe the patient’s presentation with the intention of providing helpful treatment.” These are noble sentiments, and in no way would I question the integrity or humanity of the authors’ intentions, but the idea that a three-word diagnosis can accurately describe human experience seems naive at best. All human distress occurs within the context of complicated factors (biological, psychological, emotional, interpersonal, social etc) and it is this context that demands our assessment and understanding, not reducing it all to a subjective judgment by a clinician as to whether a particular emotion is ‘excessive’ or ‘disproportionate’. How much distress ought a cancer patient to have? What democratic authority gives any of us the right to say what is excessive or proportionate about another person’s thoughts, emotions and behaviour? The SSD criteria in this regard are dangerously loose and over-inclusive.

My patients are already often worried that if other people see their physical and emotional distress they risk being perceived as negative, not coping, being ‘weak’, or risk escalating the distress of others around them for which they already feel guilty. It seems likely that this reticence to voice their concerns and obtain support will be compounded if we burden them with yet another medical diagnosis to worry about, one that seems to corroborate their self-doubt. There is already good evidence that cancer patients do not tell professionals about their very real concerns (e.g. pain, Ward et al, 1993), and there is a danger that the fear of a psychiatric diagnosis will amplify this.

People with cancer experience intense levels of fear, often for prolonged periods. When they have finished active treatment it is very common for people to become vigilant about their bodies, looking for signs of disease recurrence, sometimes for years. Do we really need to assign a mental disorder to this very natural state of vigilance? Can we not support people with these concerns without describing their distress in terms of a psychiatric illness?

In light of the epidemic of psychiatric diagnoses over the past two decades (e.g. depression, Horwitz and Wakefield, 2007) one might have thought that psychiatry would be more cautious before constructing new diagnoses. Or perhaps not. With each successive edition of DSM more and more human distress has been colonised as a mental disorder (with this new edition even grief becomes prey). Surely the controversy surrounding the pathologization of human distress and other aspects of DSM-5 should no longer be confined to professional discourse but warrants a more public debate?

References

Horwitz A, Wakefield J. (2007) The Loss of Sadness: How psychiatry transformed normal sadness into depressive disorder. New York: Oxford University Press

Ward SE, Goldberg N, Miller-McCauley V, Mueller C, Nolan A, Pawlik-Plank D, Robbins A, Stormoen D, Weissman DE. (1993) Patient-related barriers to management of cancer pain. Pain, 52, 319-324

I am a retired diagnostic radiographer and I was diagnosed as having "CFS/ME" on the basis of a second opinion over 16 years ago.

During 2004 I changed my GP and met a new GP who decided he wanted to review my medical history afresh.

This new GP just happened to have a friend who had Behçet's disease - a form of systemic vasculitis amongst 20 others.

I then spent 4 years and around 8 clinical referrals before I met a doctor who could piece my medical puzzle together and during 2008 I was formally re-diagnosed as having Behçet's disease.

Psychiatrists involved in the psychologisation of physical symptoms are not specialists in rare auto-immune diseases that may well show up negative on blood tests or CT/MRI scans.

I have challenged those working in Liaison Psychiatry to tell me if they have ever seen a patient with Behçet's disease pass through their clinics but none of them has given me an answer.

The Behçet's Syndrome Society told me some years ago that one of the most common misdiagnoses that their members suffer is the medical misdiagnosis of "CFS/ME".

I have no doubt that between 2004 and 2008 whilst I persevered with the tortuous process of overturning my unsafe diagnosis of CFS/ME; I would have been a prime candidate for a diagnosis of Somatic Symptom Disorder.

It makes me hold my head in despair when I read that SSD has been created to form additional care for patients.

The fact is that liaison psychiatry is irrelevant to the treatment and care of any patient who may be medically misdiagnosed with a biomedical auto-immune disease such as Behçet's disease.

I was medically misdiagnosed by two rheumatologists working in conjunction with the GP I had back in 1996.

As my "CFS/ME" diagnosis was given on a second opinion; this was the end of the line for me.

Anyone misdiagnosed with Somatic Symptom Disorder will have that diagnosis on their medical records for the rest of their lives even if at a later date that misdiagnosis is overturned by the patient losing their sight from a micro-embolism or losing their lives from a pulmonary embolism which can happen for people with Behçet's disease.

The patient has no protection from being medically misdiagnosed by a doctor who is insufficiently knowledgeable to recognise a set of presumed "somatised symptoms" dressed up as SSD from a set of identical symptoms relating to an untreated auto-immune disease.

Who exactly does care about the patient?

I am writing as a sociology lecturer and researcher, who as part of her research has been critically evaluating psychogenic explanations somatic (physical) illnesses of uncertain aetiology, and as a parent and carer of a woman who suffers from an organic illness that still is subject to uncertainties in knowledge of aetiology. I am author of the book 'Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses'. (Kennedy, 2012)

I submitted a stakeholder response regarding the revision of the American Psychiatric Association’s (APA)’s Diagnostic and Statistical Manual for Mental Disorders (DSM-5), specifically related to the diagnoses that denote psychogenic explanations for somatic (physical) illnesses of uncertain aetiology, and their proposed reshuffling.

Psychiatry, and medicine generally, has historically been dogged by the fundamental problem (indeed, fallacy) of inserting a ‘god of the gaps’ theory into areas where medical knowledge about somatic processes is limited. This sadly has not changed just because medical knowledge has increased, especially as, any reasonable person would acknowledge, medical knowledge is not yet complete, and may never be: therefore gaps in knowledge remain, and unfortunately these are often filled, discursively, with psychogenic explanations.

The new category Somatic Symptom Disorder (SSD), but, crucially, also the diagnosis it replaces, result from a fallacy of assuming that, just because presenting somatic illnesses are not easily explained by immediately obvious organic processes, they are therefore ‘medically unexplained‘, and, by default, ‘psychogenic’ in nature. It denotes a fallacious belief in the doctor that an illness is not organic, but resulting from metaphysical processes based on abstract constructs (beliefs, lies, delusions). These metaphysical processes are conflated with confused beliefs that the patient is doing one or more of the following: malingering; imagining impairment that is not present; hypochondria (having abnormal or inappropriate chronic anxiety about one’s health); or an assumption of “mind over body”processes, denoting a belief that behavioural problems, negative attitudes or emotional tension cause the body to develop impairments, accompanied by a belief that one can think oneself better, actually reduce or eliminate physiological impairment, by the positive power of the mind.

Therefore, far from overcoming the problems of the concept and term of ‘medically unexplained’ illness, which were claimed as an advantage of the new diagnostic categories in the various editorials in psychological, psychiatric and medical journals, the new diagnosis merely reifies and re-jiggles the fallacious notions upon which the category 'medically unexplained illness' was (and is) based.

As a result, this new diagnostic category will lead to greater misdiagnosis (even than is already unfortunately occurring) of organic illness as psychogenic, leading to psychogenic dismissal of illness symptoms and signs, both in patients given diagnoses denoting illnesses of uncertain aetiology (such as, for example, but not limited to, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, or Fibromyalgia), and in patients with established ‘uncontested’ illnesses, such as cancer, AIDS and diabetes. It will lead to further psychogenic dismissal of somatic signs and symptoms, and an epistemic ‘laziness’ that will prevent doctors from working to elucidate and treat organic dysfunction that may be extremely disabling to a patient, placing that patient at risk of further harm or even death. It will also lead to increased stigmatising and other adverse effects of being assigned a psychiatric diagnosis, in this case based on a fallacy of reasoning. Viewing a patient through the prism of a belief they are psychogenically, not organically ill, leads to doctors and other mistaking a patient’s distress and other responses to the impact of organic illness (especially if difficult to diagnose) as causative of that illness, and indeed, all future illnesses that patient endures.

There is copious evidence that the whole concept of ‘somatoform disorders’ and their synonyms, signifying psychogenic explanations for illnesses of uncertain aetiology, have already led to these problems. The category of SSD therefore will merely reify problematic and often dangerous medical practices that already exist.

Both SSD, and those diagnostic categories it supposedly replaces, signify the problem as described by Thomas Szasz (1997:23):

"In the days of the Malleus, if the physician could find no evidence of natural illness, he was expected to find evidence of witchcraft: today, if he cannot diagnose organic illness, he is expected to diagnose mental illness."

They may indeed fill “the discursive space left inadequately explained by medical accounts”(Newton, 1999: 244). But their usefulness in the filling of ‘discursive space’ of medicine, they are based on fallacious reasoning and cause iatrogenic effects.

While it is to be hoped that, in time, advances in psychiatric and medical reasoning will eventually render the current DSM categories, associated with default psychogenic explanations for illnesses of uncertain aetiology, defunct, the insertion of SSD into the new DSM is extremely worrying because those who propose this new diagnosis clearly believe their proposition already denotes advances in psychiatric thinking, when they do not. It therefore means erroneous confidence in its use may well be high. The insertion is also likely to facilitate an even greater risk of irrational ‘black-boxing’ of alleged but un-elucidated and therefore unsafely assumed ‘psychogenic’ processes, so that doctors will not be required to robustly defend the logic or rationality of their diagnosis, even to themselves, increasing the risk of misdiagnosis and its adverse effects.

REFERENCES

Kennedy, A. Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses (2012) The Village Digital Press, Market Rasen.

Newton, T. ‘Stress Discourse and Individualization” in Feltham (1999) 241-251.

Stone, J. et al ‘Functional Symptoms in Neurology: Diagnosis and Management’ Advances in Clinical Neuroscience and Rehabilitation vol. 4 no. 6 (2005) pp 8-11.

Szasz, T. The Manufacture of Madness: a Comparative Study of the Inquisition and the Mental Health Movement (1997) Syracuse University Press, New York.