*30 Oct 2010* Rafiq Mohammed, 23, a mechanic in a suburb near Chennai, has been on medication for schizophrenia for six years. Last year, his mother Firoza Banu, got him married. His bride was from Kancheepuram, an orphan with little money of her own. A childhood illness had left her lame in one leg. She did not know her husband-to-be was mentally ill. Firoza considered it a good match. The couple now has a baby girl, and, as Rafiq hasn’t been to work for the last month and hasn’t been taking his medication regularly, they survive on the little Firoza earns by making beedis.
Rafiq’s is a typical case. Families of persons with mental illness still believe marriage is the solution to their problems. “Either they believe marriage will cure the illness or help lessen it, or the parents feel that since someone needs to look after the patient when they are gone, it is best to get them married. Unfortunately, in most cases, they do not tell the future partner of the mental illness,” said Dr R Thara, director, Schizophrenia Research Foundation (SCARF). And so, the spouse is left to manage the situation as best as they are able to, often becoming both caregivers and the means of financial support. Marriage in any context is a potential minefield. Throw in a mental illness they didn’t know about and the family’s steadfast belief that marriage will be the cure, and the spouse has innumerable hurdles to cross, while their own desires and expectations from the marriage are often sidelined. “More than 50 per cent of people recovering from mental illnesses get married, but less than one-third tell future partners that they have or have had an illness. Invariably, the illness worsens, and the marriage often breaks down,” said Dr Hema Tharoor, consultant psychiatrist at SCARF. Lakshman Ramanan, 42 was in his third year of college when he fell ill. With a severe case of obsessive compulsive disorder, he could not finish his exams and dropped out. For five years, he went from doctor to doctor, without receiving proper treatment. When he was 27, his parents got him married to a girl from Thiruvannamalai. The marriage lasted 15 days. After his wife left him, Lakshman’s illness worsened considerably. So what happens when a person with a mental illness wants to get married, find a partner or enter into a relationship? “Persons with mental illness have the same rights as those without the illness to get married or find partners. But it is unfair to the potential partner if the history of the illness is not disclosed. I counsel all my patients to tell their partners of their illness before they agree to step into marriage and ensure that their families understand that marriage is not going to cure the illness,” said psychotherapist Dr Vijay Nagaswami. But parents rarely see this as an option. “They believe the stigma associated with mental illness is so strong that if they talk about it, their son/daughter will not receive any proposals. So, they keep it hidden until the marriage. Often, if the patient is a man and his family is relatively well-off, they will look for a girl who is from a poorer background and/or not very well-educated and then get them married,” said Dr Thara. Arun Vardarajan, 50, has four daughters. His oldest, Tamizhselvi, 30, has always been “dull.” “I brought them up strictly and taught never to indulge in too much conversation with anybody,” he said. But Tamizhselvi would not speak at all. To anyone. Her father decided to get her married seven years ago. For years, she had trouble with her in-laws and became sicker. Now an outpatient with The Banyan, a Chennai-based NGO, Tamizhselvi, is much better. She is also the mother of two young boys. Invariably, women are worse off in such situations. “It is worse for women in many ways, both psychological and social. If a woman with a mental illness cannot or does not want to have a child, she is labelled ‘barren’ and the husband threatens to marry again. And so, she is forced to conceive and go through with the pregnancy. Most women stop taking their medications while pregnant and this leads to a worsening of the illness,” said Dr Alok Sarin, psychiatrist at Sitaram Bharatia Institute, New Delhi. S Priya, 52 has schizophrenia. She has been married for 28 years and has three sons. On a recent visit to the doctor, she said wanted to live alone or with her sons, away from her husband, who, she said, constantly wanted sex. “He wants it all the time and I am just not interested. He tortures me. I can’t stay with him any longer. Please help me live independently,” she said. Her husband Senthil Kumar however, said her complaints were not true. If the woman is living with a man who has a mental illness, she often has to curb her sexual needs or desire to have children. “If the man is ill or on medication and does not feel like having sex, it is considered perfectly normal. If, on the other hand, the woman expresses a desire to have sex, she is labelled a ‘nymphomaniac’. Any way you look at it, their situation is bad,’’ said Ratnaboli Ray, founder of the Anjali Mental Health Rights Organisation, Kolkata. Take the case of 39-year-old Hema Prasad. She married her cousin Madhan Prasad, who has schizophrenia, 16 years ago. “I did not know he was mentally ill. His family only told us he was on some medication. After the wedding, his illness worsened. He got so depressed that he would never leave the house, would not eat and smoked non-stop. I was at my wit’s end. Relatives wouldn’t visit our home and I couldn’t see any of my friends. For 10 years, I barely stepped out of the house,” she said. Hema badly wanted children but with her husband on continual medication, it was not possible. Now, Madhan is a day-care patient at SCARF, where Hema works as a supervisor in the women’s wing. They live on her salary. In most cases where the spouse did not know about their partner’s mental illness, the parents and family are there to support the couple financially and help raise children. But if they are not in the picture for some reason, the situation worsens as, due to the stigma associated with the illness, the partner has nobody to turn to for help. Women also have to often contend with violence. If proper treatment is not sought on time and if a support network does not exist, beatings become part of their daily existence. When T Abinaya married Varun, she was in her teens and he was mentally ill. When asked about her marriage, Abinaya cries. “I had no idea he was sick. His family knew but did not inform us. He would lock himself in the bathroom for hours. He gives himself electric shocks and beats me and the children. If I attempt to bring him to the doctor, he gets angry and hits me,” she said. Abinaya’s father is dead and mother estranged. The couple has two children. Varun has now not had a bath in days. When he stopped taking his medication, Abinaya began putting it in his coffee. “He fights every day. With his colleagues, our neighbours, everybody. I have not had a moment’s rest in 23 years,” she said. Doctors and mental health activists say it only education and awareness that can help curb the perception of marriage being a cure to an illness. It is only when families begin to be open about mental illness and the treatment and the stigma associated with the diseases lessens, that such situations can be avoided. However, as an institution, marriage, when it involves mentally ill persons, has the potential to work both ways. There are many instances of the marriage working out happily for all involved — provided the history of the illness is disclosed. For instance, K Krishnamoorthy, 28 who works at a city-based NGO married Saraswathi, 22, last February. He met his wife, who has a six-year history of mental illness, at the NGO. This January, they had a son and he says, “We are very happy together.” * * *Institutions and suppressed desire* Expressions of sexuality within institutions, an increased or decreased sex drive within marriage (both due to the nature of the illness and the medication) and the vulnerability to exploitation that persons with mental illness face are problems that are still being grappled with in India. Different institutions have various ways of dealing with expressions of sexuality — suppression, counseling, altering dosages to lessen the frequency of such incidents. “In many organisations, masturbation or any expression of sexuality is punished and the patient made to feel guilty for indulging in it. But by not allowing them to respond to a biological need, we are denying mentally ill persons a basic right,” said Vandana Gopikumar, co-founder, The Banyan. Also, there is a perception that those with mental illness indulge in exhibitionism or overt displays of sexuality. “This is completely untrue. The sexuality of persons with mental illness is no different from that of other individuals,” said Dr K V Krishna Kumar, senior psychiatrist at NIMHANS. This is an area that has not received much attention in India. “That is not to say that this is not an issue that deserves attention. It is just that it falls low on the list of priorities when we are attempting to deal with hundreds of homeless or abandoned mentally ill people in the country,” said Dr Sarin. *The dilemma of a parent* A major reason parents get their mentally ill children married off, is because of a question they are fearful of: “Who will look after my son/daughter when I am no longer there?” As there is no clear framework in the Indian context over guardianship of persons with mental illness, this fear often drives parents to arrange hasty marriages. “The crux of this issue is the question of how to define a person’s ability to take care of him or herself,” said mental health activist and former caregiver Mohan Ramamoorthy. “Following that, at what point is that person’s ability to take care of herself in doubt? These are the questions being debated when it comes to the rights of mentally ill persons. It depends on the type of mental illness and the various levels of that illness. Right now, the framework on these issues, is fuzzy,” he said. Guardianship involves a host of issues, including those of property rights, custody of children and transference of the guardianship from, for instance, a parent to a sibling or a spouse. In all of these issues, it is essential to obtain consent from the person involved and keep in mind what they want, Ramamoorthy added. *(Some names have been changed)* — [email protected] -- You received this message because you are subscribed to the Google Groups "Mental Health Advocacy (News 'N Views) India" group. 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