At 29, Ms. S got married to a man without a proper job and in considerable debt. Within six months, he had sold her jewels to repay his loans. Ill treated by her in-laws, she did not have much support from her brothers, her only other family. When her husband, unable to pay off his debtors, hung himself; she continued to live in his home for their daughter's sake. However, constant harassment led to increased irritability, poor sleep, talking to herself as a response to voices. She became very aggressive towards her brother and in-laws and reported that they tortured and threatened her. She would take her daughter to school even on holidays, expressed increased religiosity, was found talking and laughing to herself, neglected personal hygiene, and started bathing in public.
Amicable solution
When Ms. S was admitted at the residential centre, we created a treatment and management plan, including use of antipsychotic medicines, a supervised structured activity schedule, keeping her engaged with kitchen work and insight-oriented counselling. Even as she improved, neither her brothers nor the in-laws evinced interest in taking her back. The case manager paid a home visit and spoke to them. It was finally agreed that while she would live with the in-laws and the brothers would provide financial help. This seems to be working so far and Ms. S is regular for follow-up and is able to take her of her child. Her story is typical of many women who either lose their husbands or are abandoned after they fall ill. In this case, persistent rehabilitation and education of the family helped us find an amicable solution.
The word schizophrenia is as complex as the disorder; many people have not heard of it, do not understand it and even have problems in pronouncing it. In 1984, when we named our non-profit organisation (NGO) the Schizophrenia Research Foundation, many well-wishers advised us to change the name to Mental Health Foundation or something similar, which would be simpler to understand. But we strongly felt that only by using the name would we achieve one of our main objectives — to increase visibility and awareness of schizophrenia.
Why is it important for people to know about schizophrenia and understand it? One little-known fact is that it affects 8-9 million Indians, adversely affecting their productivity and causing stress to their families and care givers. Understanding schizophrenia is also important because it strikes young people during their formative years. Schizophrenia has been referred to as the “greatest disabler of youth” and is among the 10 most disabling conditions in the world, as per WHO estimates.
Schizophrenia is often mistaken for “oddities of adolescence” or “eccentricities of the youth” or held to be the result of black magic or visitation from spirits. All this leads to delay in seeking help and results in the condition becoming chronic. It is also confused with mental retardation, autism and a dissociative (dual) personality disorder (Jekyll and Hyde phenomenon).
So, what is Schizophrenia? It denotes a severe and complex mental illness in which the patient's ability to think, feel or behave is impaired. In some cases, it is obvious that the person is ill; in others, he may look totally normal. It is also possible that he is unaware that he has a problem.
What causes schizophrenia? Genetic factors play a role; we have seen definite structural and neuro-chemical abnormalities in the brain in patients with schizophrenia. Stress, family and social pressures, if intense, can also lead to schizophrenia in a vulnerable individual. Till today, there does not seem to be a well-defined, preventive strategy. Early diagnosis and treatment is, therefore, all the more important.
The outcome of the disorder is variable. There seems to be a rule of the third; a third of all patients do well with treatment and are able to lead a largely normal life. Another one-third improves but has repeated episodes, sometimes brought on by stress. The final one-third third, tragically, does not show substantive improvement and may need lifelong care. Support from mental health professionals and families are both critical.
Take the case of Mr. V, the eldest son of a temple priest in Chennai. When he secured admission in IIT, it was a moment of great joy. Suddenly, after about eight months, he returned home. He was very confused and afraid that people were out to attack him and kill him. He responded to medication and we sought a transfer to IIT, Madras. However, even here, his academic performance was far from satisfactory. With regular medication, our support to the caregivers and counselling coupled with a high degree of understanding from the faculty, he managed to complete his five-year course. But, soon after, he stopped medication and became hostile to the treating team. He gradually deteriorated and all persuasion by his mother, his primary carer, bore no fruit.
When I paid him a visit, I found him unkempt sitting on a bench staring into space. He spent most of his time sitting before pictures of various gods or listening to the BBC. After the father's death, the mother had to mobilise all possible resources, human and financial, to take care of him. Since he was refusing any intervention, we persuaded him to get admitted in our residential rehabilitation centre.
Painful reminder
Ten years of no treatment had played havoc and he was reduced to a passive, uninterested man who showed no motivation. Now he works in the sheltered workshop, does not talk much about his family and seems resigned to his life. Every time I see him, it is a painful reminder that schizophrenia has effectively put out the twinkle in his eyes, the fire in his brain and the joy in his family. This is despite good initial treatment and strong family support. His story illustrates how lack of continuity of treatment can break the trend of improvement. Then despite the best of care, such persons improve only to a certain extent.
I would like to emphasise the importance of early detection, regular treatment, good family support, meaningful activity/vocation and empowerment and encouragement of the patient. Only then will we have better outcomes for a greater percentage of the many people living with schizophrenia.
What families can do?
Educate and inform yourselves more about the disorder
Join/form support networks and groups
Engage in advocacy; disability benefits, health insurance coverage
Fight stigma; break down barriers of ignorance, prejudice ad discrimination
Protest wrong portrayal by media
Identify subsequent caregivers in the family/network
Make financial/ physical arrangements for patient's continued care
Look after your own physical and mental health
The author is the Director, Schizophrenia Research Foundation (SCARF). Website:>www.scarfindia.org
