Schizophrenia is among the ten most disabling conditions affecting mankind, affecting 0.5 to 1% of the population universally. Yet, it is poorly understood. Launching a countrywide campaign in February this year, President of India A.P.J. Abdul Kalam stressed the necessity to remove the stigma associated with mental illness. This will bring more patients forward for early intervention. It will also result in better compliance and improve the chances of a full recovery. Of the 30 million mentally ill Indians, over seven million suffer from schizophrenia. It is also the most disabling of all psychiatric disorders.

The term schizophrenia is derived from the Greek words skhizein meaning ‘to split’ and phrenos meaning ‘the mind’. Broadly, if our thoughts are coherent, our emotions appropriate and our perceptions correct, we behave in a socially acceptable manner and are in harmony with other human beings. We perceive our external reality in the same manner as others do and we are not at variance with them. However, in victims of schizophrenia, thought, emotions, perceptions and actions are at cross-purposes with each other. Our perceptions become highly idiosyncratic, we have beliefs that no one else shares, we become progressively isolated and withdraw into our own, completely different and almost always illogical reality.

Says Dr. Shobini Rao, a leading researcher and Professor of Clinical Psychology at the National Institute of Mental Health and Neurological Sciences, Bangalore, “Schizophrenia has a strong component of brain dysfunction and is not like a stroke or meningitis which people can easily understand and immediately empathize with.”

Also, there is the terrible stigma attached to diagnosis - it is considered unacceptable to reconcile with the illness and have the ‘family reputation’ damaged. Doctors say that what people have to understand is that the genes can’t change - it is the environment that must.

Modern research also suggests that schizophrenia is not one disorder but a group of different disorders with similar symptoms or manifestations. It is often a chronic disorder that severely impacts the person’s life and the society around. Early intervention followed by appropriate and long-term support significantly reduces the impact of the illness.

Unfortunately, in regions with poor economic and health care facilities, the delay in treatment is often in terms of years and, frequently, many never make it to the required care.

An overwhelming majority of patients with schizophrenia in developing countries live with, and are cared for by, their families. This is partly because of the social and cultural traditions but also because of an inadequate mental health infrastructure. Several reports have documented the high burden of care borne by family members, the great distress caused by the symptoms and problem behavior of the patients, financial hardships arising out of the costs of treatment, and impaired coping strategies that the family is compelled to adopt.

One third of the chronic mentally ill in the community remain untreated. The highly inadequate facilities for the treatment of the mentally ill have resulted in a strongly felt need to ‘reach the unreached’. Many nongovernmental organizations are trying to fill this gap.

The costs borne by society in terms of social welfare administration and criminal justice, the time spent by unpaid caregivers, and the great loss of productivity due to the illness itself, are perhaps greater than direct costs such as hospitalization. There are, unfortunately, very few trained professionals in the field of rehabilitation in India.

As Dr.Rao says, “Do not exclude and isolate the mentally ill. Only when we accept can we move forward and find solutions. Also, we need to augment resources. There are funds, sympathy and awareness available for problems like malaria, blindness or family planning. Schizophrenia, however, remains untouchable at all levels - policy, funding, infrastructure, treatment and support.”

In the past, the term ‘schizophrenia’ conjured up a stereotype of fear, filth, asylums, chains, straightjackets and the terrible fear of having reached the point-of-no-return. Antipsychotic drugs have made a quantum difference by introducing humanism not only into the lives of the patients but also the image of the illness. Patients have now been mainstreamed into the community with a great deal of success.

Says Bernadetto Saraceno, Director of the Department of Mental Health and Substance Dependence in the World Health Organization (WHO), “Increasingly, there has been the shift from care in institutions and hospitals, to the community. The World Health Report of 2001 recommends community care as the ideal care model in developing countries as well. It is true that we require innovative thinking to overcome the scarcity of resources.”

In some countries, the shift in focus from institutionalized care to community care has led to the closure of more than 50% of all mental hospital beds. On the other hand, many developing countries have too few beds for mental health patients. In some states of India, for example, there are no mental hospitals at all.

Medicines are really working miracles. Says Dr. Vijay Nagaswami, noted psychiatrist and author, “In drawing up a treatment plan for a person suffering from schizophrenia, the mental health professional - and society at large - should take a very broad view of the patient, seeing the latter not as a collection of symptoms but as a suffering human being.”

Here follows the true story of a brave woman who not only had to fight schizophrenia, the disability, the social stigma, the repercussions and the side effects of medication, but also had to cope with poor family support and still emerge a winner.

Says Dr. R. Thara, Director of the pioneering Schizophrenia Research Foundation (SCARF), Chennai, which recently completed its second decade of path breaking care, “Her faith in treatment and the rigor with which she followed up with me over twenty years ensured that, despite relapses, her functioning was largely intact. She has amply proved that schizophrenia can be effectively dealt with.”

Selvakumari was a bright-eyed 17-year-old when her mother brought her to the psychiatric out patient department. She had not been doing well in studies lately and even refused to go to school on certain days. This was because she was convinced that some of her classmates were talking ill of her and resorting to techniques that cast her in a bad light with her teachers. She also heard her teacher’s voice when she was alone, often admonishing her, and occasionally instructing her.

She was not sleeping well and looked tearful at times. All this had been going on for nearly nine months. Having found no answers with the usual gamut of astrologers and religious healers, her mother brought her for psychiatric treatment, but with many reservations. Stigma was paramount in her mind, for news of an unmarried girl being called ‘mad’ meant the end of her very future.

The diagnosis was schizophrenia, which had manifested itself with typical symptoms: hallucinations, delusions, feelings of persecution and an emotional state bordering on depression. Medication was started and regular reviews done. Still socially withdrawn, Selvakumari nonetheless returned to school and took care of herself by having her medicines on time.

However, a series of tragedies posed a new test at every turn. Her father died, she was married against her wishes to a man who turned out to be a professional gambler (she told her doctor privately that she felt unable to relate to anyone closely but her family’s pressure prevailed), she later had a baby and her financial troubles were endless. But even through three relapses, she kept her appointments with her doctor and adhered to her drug schedules. Eventually, she also became a teacher.

Selvakumari educated her daughter who in turn became a teacher too. The delusions and hallucinations continue occasionally. She sometimes confesses to her doctor that she is not sure if she can handle her job and life but must do so for the sake of her daughter.

Says her Dr. R. Thara, “As I recall the significant conversations I have had with Selvakumari, I realized that if doctors can admire their patients, then Selvakumari will be on the top of my list. She may not be an Oscar award winner, but in her own small way, she has proved to the world what schizophrenia is about.”

• Compendium of Abstracts of the International Conference on Schizophrenia (Jan 29 - Feb 2, 2004) organized by the Schizophrenia Research Foundation, Chennai, India.

• The Splintered Mind/Understanding Schizophrenia by Dr. Vijay Nagaswami, Penguin India Books

• A Study of Mentally Disabled Women - SCARF, 1997-98

• Making a Difference/Caring for Homeless Mentally Ill Women/The Banyan Experience - An Evaluation Report prepared by NIMHANS, 2003