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The Medically Ill Speak For Themselves

And don't want to be labeled as mentally ill.

The experts who created the DSM 5 'Somatic Symptom Disorder (SSD)' had their hearts in the right place. Their concern was that not having a psychiatric diagnosis might deprive people with a medical illness from getting needed psychiatric help to augment the ongoing care from their medical doctors. But it seems not to have occurred to them that the road to perdition is paved with great intentions and terrible unintended consequences.

The opposition to SSD has been fierce. Previous blogs on the topic have attracted many tens of thousands of viewers and many hundreds of impassioned responses.

Richard Lawhern, PhD has supported chronic face pain patients for over 17 years as an online author, webmaster of prize-winning patient support sites and moderator for patient self-help forums. He recently conducted a survey of patient experiences related to mental health referral by medical doctors.

"We drew our survey group from Ben's Friends—an online mutual support organization with 36,000 members in 33 rare disorder communities. These disorders are often complex, difficult to diagnose, and expensive to treat."

"Our online survey consisted of 29 questions and a narrative completed by 180 people during February 2013."

"Most responders suffered from painful conditions: Trigeminal Neuralgia (82), Fibromyalgia (25), Lupus (20), Chiari Malformation (15), and Psoriatic Arthritis (14). Median age was in the mid-40s; 81% were female; half had medical complaints for more than 10 years; many had seen 10 or more doctors and had taken years to get a diagnosis.

"Due to limited sample size and the self-selected nature of the survey, results must be interpreted cautiously, but this patient input does suggest that psychiatric diagnosis and mental health referral can often be a very mixed blessing for patients."

"Many patients believed they had been referred because their medical doctors did not know what to do with them and wanted to be rid of them."

" Nearly half reported being referred over their own objections. Almost 20% were told that if they did not go for mental health evaluation, they would not be further treated by their medical doctors."

"More than half reported that they had not been given a medical diagnosis before they were referred for mental health evaluation."

"Half of all responders had been "fired" (discharged) at some time by a medical doctor, not always as an outcome of mental health referral."

"The most common mental health diagnoses were depression (105), anxiety (90), stress (86) and panic attacks (42). Half of those referred received an average of 3 psychiatric diagnoses each, some of them divergent or contradictory."

"Fifty-five responders (30%) were told that their physical symptoms were caused totally or in part by a mental condition. 'Psychogenic pain' was named by 22 patients, of whom 17 disagreed with the diagnosis or other information provided by the mental health professional. Several patient narratives expressed outrage that a psychological professional had refused to believe their chronic pain had caused their depression -not the other way around."

"68 responders were prescribed medication by a mental health professional. Of these, 60 reported "no change" in their outcomes."

"Mental health referral outcomes were often reported as neutral or negative. Many reported increased distress from being disregarded and invalidated by medical doctors. Five had insurance limited or were refused further payments for medical treatments after the mental health evaluation. In a few instances, the mental health professional explicitly stated that the physical symptoms were "all in your head" before another doctor later found a medical explanation."

"It was apparent that some who filled out the survey had been referred or evaluated by physicians who were ill-trained, overly busy, or predisposed to a negative attitude toward women who most often experience chronic pain. The latter observation aligns with many previous literature reports that pain symptoms in women are frequently dismissed by medical doctors as 'psychological'"

Thanks so much, Dr Lawhern. So, what is the bottom line? Patients often experience a mental health referral as a dismissal that reflects the doctor's frustration in not being able to make a clear diagnosis and offer an effective treatment. Getting a mental health referral and an additional diagnosis of mental disorder is not seen as helpful by many consumers and they don't believe it leads to useful interventions.

In my view, the experts working on DSM 5 wanted to be helpful, but the people they wanted to help see the DSM 5 changes as harmful.

Some patient advocates have questioned the experts' motives- whether the over inclusiveness of DSM 5 SSD is purposely intended to drum up business for psychiatrists. This misreads the reason for their errors. The experts' conflict of interest is emotional and intellectual not financial- their need to believe their clinical and research work is helpful and important to their patients blinds them to its potential harms and risks.

Physicians should exercise profound caution and self-restraint before loosely making a psychiatric diagnosis related to physical symptoms or attempting to coerce a patient into a mental health evaluation.

Psychiatric treatment can be very useful, sometimes necessary, when the diagnosis is clear and the patient is willing. But it should not ever be coercive; or a dismissive way of brushing off the patient; or a way of avoiding a careful medical work-up; or camouflage for uncertainty.

Uncertainty is far better than false certainty. As always, doctors must first do no harm.