The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally illBMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f1580 (Published 19 March 2013) Cite this as: BMJ 2013;346:f1580
All rapid responses
As someone who has been in psychological medicine for almost 40 years and was involved in the formulation of DSM-IV, it took very little time to notice the flaws in the new diagnosis which one might well sum up as post-modernist 'hypochondria'. Dimsdale and the other members of the male dominated DSM somatic symptom workgroup concluded that we required the new term to cover "disproportionate and excessive thoughts, feelings, and behaviors". That leads to the question: who decides what is disproportionate and excessive and on what basis? There isn't always a strong correlation between the size or nature of a lesion and reported symptoms. I've never had one but believe patients who say that a small kidney stone can cause a great deal of pain. When does the expression of that pain become disproportionate? I communicated with one of the members about the confounding factors that medicine in the UK tends to overlook, for example, the effects of cleaning products and air freshners as described in reliable journals such as the Lancet. These can not only cause symptoms such as headaches and dizziness, but may also affect cognition and might therefore affect how the person presents any complaints to a physician. We also know that certain cultures tend to use more emotional language (e.g. the Italians) and are therefore more likely to receive a psychiatric diagnosis . The same goes for women .
When I came into the profession, period pains were a criterion for the diagnosis of hysteria and homosexuality was regarded as a psychiatric disorder. Since my participation in DSM-IV, things do not appear to have changed very much. Good arguments from highly qualified mental health professionals have been rejected and I'm not persuaded that my colleagues at the APA have a full understanding of women's health. Perhaps it will take a few lawsuits before they acknowledge the dangers of SSD and scrap it.
All things considered, we do need a category for the few individuals with physical symptoms as a result of emotional distress. However, when it comes to choosing the workgroup, it might help if at least 50% of the members have experienced childbirth or endured at least six months of endometriosis or another painful condition that their GP regarded as something they should 'learn to live with'.
Ellen Goudsmit FBPsS
1. Goudsmit EM, Gadd R. All in the mind? the psychologisation of illness. The Psychologist 1991;4:449-53.
Competing interests: No competing interests
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.
Competing interests: M.E. patient and advocate
This would be a terrible mistake and a lazy one. Lumping people into a psychiatric pile just because you can't figure out what is wrong with them, is a travesty!
Competing interests: No competing interests
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?
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
Competing interests: No competing interests
This is very worrying. Many patients with thyroid disease have depression as a symptom and if they are not diagnosed for a long time, as often happens, or if they are not on the correct treatment, as often happens, they will be mislabelled. With the recent research showing that the TSH is not log-linear, as thought, there could well be many patients with CFS/ME, fibromyalgia and depression out there who will now be told they are mentally ill when they actually have thyroid disease.
Competing interests: No competing interests
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?
Competing interests: No competing interests
-On behalf of those with a Functional Neurological Disorder which has been listed under the Somatic Symptom and Related Disorder heading, we are admittedly against the the SSD section in the upcoming DSM-5. We have actively voiced our concerns over the past year with our pleas falling on deaf ears.
- The fact of the matter is the way it is written the term Somatic will become just another term for Hypochondria. Concern lies in how the DSM-5 Somatic Symptoms criterion, or lack there of, will read and be overly diagnosed. This will cause those without a clear reason for symptoms to be quite possibly wrongly labeled.
- There are many illnesses that could fall in this category that are not fully understood and in some eyes seen as questionable. Whether it be from lack of research or technology there are still medical mysteries and questions that need answers. It takes time and energy by not only physicians but also patients and caregivers to find coping methods when they are not readily available. A desire for better health and/or refusal to accept a diagnosis a patient knows is not accurate is not synonymous with illness anxiety. What could very well be ill perceived by a physician and possibly even an annoyance as over involvement of a patient should not be misconstrued with a negative stigmatic diagnosis such as Somatic.
-FND patients run the risk of being the first group targeted with the Somatic label. -Women are most often labeled with a FND diagnosis.
- It is insinuated that those with what are referred to as functional symptoms are in bodily distress and this is the reason for their symptoms.
- You may notice the term FND being used instead of the proposed FNSD. We will stand our ground of not having symptoms added as part of the name. No other illness is this the case. Those that suffer with this debilitating disorder will not have their lives reduced to symptoms. The fact that the majority of all research has focused in the same general direction in the past and has yet to come up with a *medically explained reason does not mean that there is not one. We will also not use the Conversion Disorder label for reason of lack of objective evidence based research to support the ideology.
- We acknowledge the SSD work group for the psychological criteria removal as a step in a positive direction. Clarifying that many of those with a Functional Neurological Disorder diagnosis do not have the expected mental health illnesses nor are they "converting" any past trauma to be the causation of their physical symptoms. We are hopeful to eliminate the emphasis of only psychological causations to these symptoms. It does not make sense to have such a focus in psychology when change of behavior is not the key issue nor does it always manifest. However, loss and/or change of neurological function is the prominent feature and needs immediate attention. This is not to diminish the psychological connections that have been connected to the disorder, rather, to address the physical symptoms that need to be attended to in a timely fashion.
- Do not mistaken our stance against this criterion as an attack on others that suffer from illnesses embodied in the Somatic label. The argument we are trying to make is: the coding as it sits will misdiagnose many and then prevent proper care. Yes, some people do suffer from Somatic Symptoms and they should not be looked down upon; they should be properly cared for and treated with respect.
- Many who suffer with chronic illnesses for whom are subjected to horrific pain with out proper care and effective treatment plans will of course run a risk of having co-morbid depression and health anxiety. This should be cause for immediate medical attention and not dismissed as Somatic.
- "It is debilitating for individuals suffering from multiple persistent somatic symptoms and distressing preoccupations. The diagnosis of Somatic Symptom Disorder may be a logical next step in recognition and treatment of these patients."
- A diagnosis of Somatic Symptoms Disorder in the new DSM-5 will not be helpful nor beneficial for anyone who receives this label. Patients that are listed under the heading (not even given the label mind you) struggle everyday with the stigmatism that is implied with being listed with this heading. It can only get worse having the actual Somatic diagnosis added to any patients file including Cancer, Stroke, Autoimmune, Cardiac, FND, etc. sufferers. Those that are ill would appreciate effective treatment plans, answers to their concerns, their voices to be heard and addressed, and not diminish the day to day struggles of their illness to bodily distress or health anxiety.
- Our contention is not with the group itself nor the doctors trying to research and treat those with this label. For the reasons stated above, we are against the changes to the SSD section in the DSM-5. The label given to illnesses under the Somatic heading and the Somatic label itself destroys lives.
- We have concern with the SSD workgroup and to a "we will fix it later approach". They are correct that the DSM-4 was in dire need of change, but for the better is not the direction they have gone. They have ignored the pleas to fix this section and fix it right the first time. There has been reasonable time to come up with an adequate criterion, Yet they have fallen short. What makes anyone think someone will come back and fix these mistakes with a revision in a timely matter? How many more people will die of real illness while being labeled Somatic, how many will be sent home to suffer in excruciating pain?
---Must we all remember this is not about a book; it is about lives. These lives and labels may intertwine and live in your home one of these days.
non-profit patient advocacy organization
***A medical explanation for some is getting closer.
Competing interests: No competing interests
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.
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.
Competing interests: Given in response.
The well meaning but misguided approach advocated by Drs Dimsdale et al as proposed in the revised DSM V strikes a worrying chord with patients and those that support them.
Emotional disturbance, raised intrusive thoughts, and periods of low mood are perhaps to be expected when people become ill. It is for some the first indication that something is ‘not quite right’ and for which they seek medical attention in the hope of finding out what is wrong. Some will quickly be diagnosed and others often wait years to get a diagnosis. In the meantime, such patients exist in a stressful hinterland of uncertainty and apprehension. The more complex and obscure the diagnosis often the longer and more arduous the process. Moreover, the patient is not only trying to engage with the medical systems for help, care and legitimacy – where they are not always responded or listened too, often for years. Patients are also facing many losses including battling to stay in employment, retain and remould their sense of self, working like crazy to hold on to relationships that can dissolve through uncertainty, and over time access to benefits and pensions that are often highly opposed to believing the enormity of their debility. Losses are high when we get ill and it should be no surprise to anyone that this can be a distressing, destabilising and overwhelming experience.
Over time it is hoped that most patients will adjust as best they can with support to their medical condition(s) whether they have a cause for their condition or nothing so definitive. Some may adjust quicker than others. Those with more emotional, financial and relationship resources are perhaps likely to adjust the quickest. Some will see it as meaningful and beneficial to seek emotional support through counselling and/or some relief from symptoms with medications. It does not seem helpful nor is it likely to reduce the doctor patient power imbalance to stigmatise such adjustment to often severe, enduring and extraordinarily debilitating medical conditions, on the say so of a clinician who may be emotionally blind (consciously or unconsciously) to the suffering he or she is witnessing or through lack of appropriate training and knowledge “believes” that the patient’s distress is “excessive”. This is not supportive at all. It is the medical equivalent of plonking a box of tissues under the crying patient’s nose. It says ‘please shut up and stop complaining.’ Some will do just that: think they are not being believed and/or misrepresented, as “it’s all in your head”, and will exit the medical system and refrain from seeking further help due to the trauma of such a powerfully insensitive, stigmatising experience. For some, this will be a disaster and for others possibly even fatal. The more vulnerable and debilitated the patient the more likely this type of iatrogenic harm will occur.
I doubt that many caring and reflective professionals aware of the impact on vulnerable people of the effect of such unhelpful and stigmatising labels will use this diagnosis. It is perhaps more cynical, however, probably not far off the mark will be the obvious use of this diagnosis to limit the time patients can obtain out of work insurance policies which are often limited to 2 years for psychiatric conditions.
Adjustment disorder can be used appropriately to enable access to therapeutic interventions with reduced likelihood of jeopardising the patients/doctor relationship and without the danger of psychiatric stigmatisation and possible belittling of the patient’s suffering in the process. Patients often need ongoing care, support and reassurance. They do not need doctors telling them that their distress is, in their opinion, “excessive”.
Competing interests: Volunteer advocate and counsellor for patients with neurological disorders.
The exchange between Dimsdale and Frances is a reminder that, forty years later, we are still sorting out hysteria. When DSM 3 abolished hysteria in 1980, there had to be some replacement for diseases that were, essentially, "all in your head," though by 1980 no clinician would use those feared words. DSM 3 created two categories that addressed the mind-body breakdown in the diagnosis of hysteria (the term had other dimensions as well): somatoform disorders, and somatization disorder. The latter was something concrete, real: Pierre Briquet had described it in 1881 and one could understand that some patients did have chronic complaints in multiple organ systems not caused by organic disease. Allen Frances's DSM 4 in 1994 continued this DSM 3 architecture, making minor modifications. I am astonished that DSM 5 takes us even further from the idea of the breakdown of the mind-body relationship for nonorganic reasons. The diagnosis "somatic symptom disorder" is vague and nonspecific, politically correct but scientifically incorrect. It will cause much confusion.
Competing interests: No competing interests