“I was taken to a psychiatrist when was in 12th standard,” says Deepti Shankar*. The 34-year-old resident of Noida was talking about her first mental health diagnosis. Family conflicts, unhealthy personal relationships and the loss of her father had all contributed to severe distress and one attempt at suicide. But to add to her mental burden, the psychiatrist wrongly diagnosed Shankar with bipolar disorder.
“Based on whatever signs I was showing at the time, he promptly diagnosed me with bipolar disorder,” said Shankar. “The diagnosis was wrong. It did not take into account the range of issues that I was experiencing. I had no knowledge at that time about what it meant.”
What it meant was that although it was relatively easy for Shankar to get a diagnosis, it was far more difficult to get out of the wrong diagnosis. Over time, Shankar realised that the stigma that came with her diagnosis of bipolar disorder exacerbated her existing problems. Moreover, she was being treated for symptoms and experiences of bipolar disorder which she did not have.
“The medications had severe side-effects and they were not helping,” said Shankar. “I was pursuing my post-graduate degree in psychology at the time and I wasn’t able to function well most of the time each day. I used to faint at random moments. The psychiatrist also refused to switch the medicines, when I told them about their effects.”
As Shankar started to research her condition, she started recognising that her symptoms might actually be those of sensory processing disorder.
“It was more of a self-discovery,” she said. “I found a growing community with the same experiences of the symptoms as me and I read a lot. I know one cannot ‘diagnose’ themselves so this is rather an undiagnosed sensory processing disorder that I live with.”
Often being confused for bipolar in adults, sensory processing disorder is a neurological condition where the brain finds it difficult to respond to everyday information received by the senses from light, sound, touch and so on. Shankar would sometimes need higher stimulation and be restless. At other times, she would need to block out stimuli – certain light or a particular sound – and it would seem as if she was depressed.
All this led to her diagnosis of bipolar disorder, which is characterised by extreme mood shifts from mania – which is characterised by elevated mood and hyperactivity – to depression, and from which it was very difficult to go back.
“Once the label [of bipolar or any other mental illness] has been attached to you and the treatment begins, you cannot change the doctor’s mind that this is not exactly what you are going through,” said Shankar. Her treatment for bipolar disorder lasted for about 13 years.
Overeager to reach a diagnosis
A diagnosis is crucial to the treatment of any illness because it is the first step in deciding a treatment plan to get better. A wrong diagnosis not only fails to help treat the original problem, it can create new problems of its own by setting the wrong course of treatment. Diagnosis is particularly complicated in mental health.
Between the publications of the first edition of the Diagnostic and Statistical Manual of Mental Disorders or DSM in 1952 and its fifth edition in 2013, the number of diagnosable mental disorders has risen from 106 to little less than 300. For decades the DSM has been the “psychiatric bible” – the only tool used by mental health professionals to treat patients. Mental health experts around the world have pointed out that while the larger number of diagnosable mental disorders has increased the likelihood of more people getting diagnosed and treated, it has also escalated the chances of misdiagnosis. As pointed out by Stuart A Kirk and Herb Kutchins in their research, the DSM’s diagnostic criteria leaves no room for uncertainty and ambiguity and so almost everyone who exhibits any symptom must be diagnosed.
This eagerness to reach a diagnosis is the main reason behind both misdiagnosis and over-diagnosis. A misdiagnosis is an incorrect categorisation of an illness. Over-diagnosis is diagnosis of an illness that will never cause symptoms of illness during a person’s life. A study conducted in 2009 at the Brown University School of Medicine in the United States showed that about 57% of diagnoses of bipolar disorder in adults were found to be wrong after more comprehensive reviews.
Much of misdiagnosis and over-diagnosis of mental illnesses is also due to the differences from diagnosing physical illnesses. In most physical illnesses, there are visible symptoms that can be seen, scanned or measured. To diagnose a mental illness, doctors must often rely on observing behaviours while taking into account their patients’ personalities. Doctors’ own biases can cloud mental health diagnoses.
All behaviours are not symptoms
The validity of psychiatric diagnosis was first challenged by David Rosenhan in 1973 with his classic study, On being sane in insane places, where he sent eight mentally healthy people to a mental health institution. They simply had to enter the premises claiming that they have been “hearing voices”. The participants were immediately admitted, diagnosed with paranoid schizophrenia, put on medication, which they secretly spat out, and discharged after 20 to 50 days.
In the second part of the study, hospitals were told beforehand that a number of pseudo-patients would be sent to them whom clinicians were supposed to rule out. The clinicians filtered 193 patients out as imposters only to have Rosenhan reveal that he never sent any patients to the hospitals. The people who the clinicians said were imposters were patients at the hospitals who had already been diagnosed with psychiatric disorders.
Rosenhan’s study raised serious questions about what behaviours are symptoms of illness and how medical professionals fail to differentiate between a behaviour that is normal for a particular person and a symptom of illness. In his paper, Rosenhan wrote, “As far as I can determine, diagnoses were in no way affected by the relative health of the circumstances of a pseudo-patient’s life. Rather, the reverse occurred: the perception of his circumstances was shaped entirely by the diagnosis.”
Shankar can relate to this. “Behaviours and signs such as being ‘high on energy’ that were normal for me were taken as symptoms,” she said. “People have different sensory needs and ways of expression, which need not be considered as a diagnostic symptom but the rush to reach a label and medicate made them overlook the symptoms that were indeed causing harm to me.”
Himani Kulkarni, a psychologist in Delhi, weighed in on the reasons behind this urgency to label and medicate. “Psychiatrists in out-patient departments [in government and private hospitals] are so overworked and understaffed that they end up providing diagnoses and medications as quickly as they can,” she said.
Kulkarni also believes it has to do with the cultural understanding of what it means to be mentally ill. “The way the field of mental health has developed, it views distress first as an illness or having a physical root and rarely ever as based on subjective experiences of the person in their surroundings.”
Then, there are the range of biases brought in by decades of marginalisation of women and sexism. In the past, women have been diagnosed with “hysteria” for displaying non-conforming behaviour. Even though such diagnoses are not allowed today, the biases behind them persist. Medical research is also centred around men and ideas of how women and gender minorities are expected to behave, once again leading to overdiagnosis of these groups.
Isolation after diagnosis
Even the right diagnosis can have bad social outcomes. When Vaidehi Chilwarwar’s mother was diagnosed with schizophrenia, her family did not know what to make of it. Chilwarwar, a Nagpur resident, is a practicing psychologist herself.
“The label ‘schizophrenic’ devastated me and it changed how we looked at her in the family,” she said. “When I was unaware about the diagnosis, I was the daughter who sought care and nurture from her. After the diagnosis, I was more careful about what to say, how to treat and behave in front of her. I believe the diagnosis also snatched away the essence of our mother-daughter relationship.”
Pop-culture and other sources of misinformation contribute to stigma around mental illness. Once diagnosed, patients are seen as dangerous or dysfunctional, as was the case with Chilwarwar’s mother.
Chilwarwar said that her mother’s symptoms were an outcomes of living in a neglectful and non-affectionate environment. “Her hallucinations and delusions were patterns that showed us a mirror of what were we doing to her,” she said. “The neglect, domination, arrogance she was experiencing as a wife and a mother got manifested as those symptoms.”
After receiving the diagnosis, Chilwarwar’s family stopped expecting her mother to get involved in the kitchen chores or perform tasks that were her area of expertise. “As a family we stopped demanding anything from her and that contributed to her sense of worthlessness,” said Chilwarwar. “I feel our over-protected nature delayed her coping [with her illness].”
Mental illness viewed on a spectrum
Treatment of mental illness has been restrictive and myopic. For example, someone diagnosed with bipolar disorder is likely to only receive treatment for the symptoms of bipolar. If the person also has constant panic attacks, this symptom might be ignored.
An alternative to this is the dimensional approach that David J Kupfer, psychiatrist at the University of Pittsburgh and the head of the DSM-V planning committee, wanted to incorporate in the manual. Dimensional approach is based on the idea that mental illnesses lie on a spectrum, and symptoms of various problems overlap rather than fit into separate categories.
Unfortunately, Kupfer’s approach was struck down by protesting psychiatrists who thought the idea was premature. But DSM-V partially included the idea. For example, the numerous subtypes of schizophrenia were eliminated as separate disorders since the condition is not stable and an affected person may display symptoms across the spectrum of subtypes.
In India, some mental health professionals subscribe to this dimensional view and speak highly of its benefits in the long run. “I do not expect DSM to see mental health as overlapping spectrums but what they can do is have more context under these terms,” said Kulkarni. “This means that categorising the illnesses based on more narratives from people coming from different communities and how they experience a particular illness would definitely help professionals get a more broader understanding and prevent misdiagnosis.”
Shankar agrees and feels that the approach could have helped her. “We need to be able to feel normal and not just functional,” she said. “Professionals need to be open to symptoms and signs that go beyond what it says in the diagnosis and discuss other possibilities, even if they doesn’t fit the diagnostic criteria.”
Diagnoses is complicated but it’s still necessary. A diagnosis is an answer to many confusions people have about the cause of their distress. But consumers of mental healthcare like often need to know more about what to do after receiving a diagnosis. Said Chilwarwar, “I would expect more clarity on the usage of medicines, effective family and community driven practices that can enable non-threatening and appropriate healing of the clients, information about what might go wrong.”