Missing the diagnosis for a misdiagnosis

Have we made any real progress with mental health care?

Several years ago, Jennifer Brea was a bright-eyed, 28-year old PhD student, in good health with a love for travel and life. One day, she was suddenly struck by a high fever of 104.7 degrees, bouts of dizziness and spells of being unable to walk. The laboratory tests always came back negative and multiple specialists said that they couldn’t identify what was wrong.

The neurologist diagnosed Brea with Conversion Disorder, a condition in which real symptoms are produced with no biological cause and may be associated with an underlying psychiatric condition. Only years later was a medical diagnosis reached — myalgic encephalomyelitis or chronic fatigue syndrome. For years, most medical conditions have been misdiagnosed as mental illnesses because of the paucity in understanding what really constitutes a mental health disorder.

“If sanity and insanity exist, how shall we know them?” asks Stanford Professor Rosenhan, in his landmark experiment conducted inside 12 different psychiatric hospitals.

8 pseudo-patients, including Rosenhan himself, presented with a complaint of auditory hallucinations. On the basis of these appointments, every single participant was admitted to the hospital with 7 of them receiving a diagnosis of schizophrenia (the eighth diagnosis was manic-depressive psychosis). Post-admission, they behaved normally and even reported that the hallucinations had gone away. Throughout the participants’ stay and until discharge, lasting between 7 to 52 days, the doctors never changed their initial diagnosis. A follow-up experiment was also conducted after a hospital challenged Rosenhan to send pseudo-patients to prove the competency of their staff. 41 out of 250 new patients were identified. Interestingly, the professor had not sent any pseudo-patients to the hospital.

‘The Great Pretender’ released by Susannah Cahalan in November 2019 uncovered the fallacies in the Rosenhan paper. Some of the statistics were fabricated, with non-uniformity in reported symptoms, exclusion of positive responses and untraceable participants. However, other researchers partially replicated Rosenhan’s research and came up with results similar to his claims.

The Rosenhan study single-handedly shook the foundations of psychiatry. With growing support, the American Psychiatric Association modified the Diagnostic and Statistical Manual of Mental Disorders. The new version of the manual, published in 1980, presented a more thorough list of symptoms and stated that a multi-symptom presentation would be mandatory for diagnosis. The manual underwent several revisions to what it is today. The DSM-V, published in 2013, is considered the Bible for emerging practitioners and insurance companies.

Despite all the progress, the real question still stands — can we truly differentiate mental health illness from the normal human experience? Or are we using it as an excuse for everything that cannot be otherwise explained?

The DSM-V is the prevailing diagnostic system of mental disorders and serves as a common language for mental health professionals who work from diverse theoretical orientations and in different clinical settings. However, there are several critiques of the DSM-V criteria and not without reason.

The validity of a diagnosis usually implies that the condition is objectively verifiable through objective tests. Yet, majority of the criteria included are symptoms reported by the patient and observed by the clinician.

For example, low mood is seen as problematic only beyond a threshold, but what is this level? Clinician’s discretion.

Similarly, the criterion for Adjustment Disorder states that the behaviours must be out of proportion to the intensity of a stressor relative to external factors.

This prime example highlights three levels of subjectivity encased within just one criterion — a) level of exaggeration in comparison to an unknown relative, b) perceived intensity based on subjective reporting and c) varied social influences in normal behaviour patterns. Who decides? Clinician’s discretion.

Furthermore, research studies have shown that the DSM-5 has poor reliability, implying that the same diagnosis will not be derived for the same clinical presentations by different clinicians. Another study done in 2013, calculated that there are 270 million combinations of symptoms that would meet the criteria for both Post-traumatic Stress Disorder and Major Depressive Disorder, under DSM-V guidelines.

In spite of this, the largest failing of the DSM-V is the new category of ‘Somatic Symptom Disorder (SSD)’, tying back to the anecdote mentioned at the start of this essay. A disorder which denotes that bodily symptoms are a manifestation of emotional turmoil.

Any person will meet the criteria for SSD by reporting just one bodily symptom that is disruptive to daily life with any of the following reactions, lasting at least 6 months — a) ‘disproportionate’ thoughts about the seriousness of their symptoms, b) ‘high level of anxiety’ about heath or c) devoting ‘excess’ time to their symptoms.

Note the words in quotation marks — disproportionate, high, excess — all quantitative measures described for a scale that doesn’t even exist.

In the words of Dr. Allen Frances, “The SSD is defined so overly inclusive that it will mislabel 1 in 6 people with cancer and heart disease; 1 in 4 with irritable bowel and fibromyalgia; and 1 in 14 who are not even medically ill.” This has potentially disastrous consequences for the medical community. People like Jennifer Brea, suffering from Chronic Fatigue Syndrome or other diseases such as scleroderma and irritable bowel syndrome amongst others would all be classed under this new category. Diagnoses of tumors, nerve impingements which are still in its early stages and not appreciable on radiographic assessment will be misclassified. The misdiagnosis will put a stop on further investigations causing a gross delay in identifying adequate treatment. Inappropriate psychotropic drugs may be prescribed which may worsen the problem or add to the patient’s woes due to large adverse effect profile and higher costs.

Why is this so concerning? Simply put, it highlights the mishaps of our past haven’t left us. We’ve only painted the crumbling walls of psychiatry with fresh paint. Without structure, the system will still crumble, regardless of the fancy paint job.

In October 2019, the World Health Organization estimated that 1 in 4 persons will suffer from mental illness at some point in their life. Currently, 450 million suffer from such conditions and 50% of them are untreated. For example, a diagnosis of bipolar disorder would easily take 5–7 years, but a misdiagnosis of Depressive Disorder could take only one appointment. It’s saddening how we stand at a juncture where we are unable to successfully diagnose mental health illness in those who do require the support. Instead, we continue to misdiagnose and overinflate the incidence of mental illness in those patients who suffer from other organic diseases or even worse, don’t suffer from any health condition at all.

Today, we do acknowledge that the Rosenhan study was a fraud, yet it danced around and brought to light one of the biggest questions that plagues the field of mental health — are we merely labelling our patients without successfully enabling them towards good health?