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Data show that at least 0.3 percent of the Indian population suffers from bipolar disorder
Living with bipolar disorder is not easy. Many people do not understand the condition and why patients with this disorder experience discrimination as a result. Urvashi Sarkar writes that an online bipolar disorder community in India is now trying to change these attitudes.
Vijay Nalawala was 40 when his family noticed that something wasn’t right.
“I am suddenly euphoric, then suddenly sink into depression, wake up in the early hours of the night and write very gloomy poetry. The fluctuations are usually very sharp and sudden,” he says.
Of course, this wasn’t the first time. Nalawala says he first started experiencing these symptoms when he was 14.
This time he sought medical help, and in 2003, he was diagnosed with bipolar disorder, a condition that causes people to experience extreme mood swings, and the person can also suffer from bouts of depression that make him feel very weak or lethargic – or just the opposite where he feels energized or Even hyperactivity.
Nalawala, now 60, has been stable for the “past five or six years,” he said. But his suffering made him realize the need to raise awareness of this disease.
In 2012, he started blogging regarding this topic. Then a friend encouraged him to create Bipolar India, a website that raises awareness regarding bipolar disorder, collects data on mental health and gives others with the condition a platform to share their experiences. Today, the site has more than 500 members.
picture released, Vijay Nallawala
Nalawala set up Pipeller India Group in 2013
Data from India’s 2016 National Mental Health Survey shows that at least 0.3 percent of Indians suffer from bipolar disorder. But stigma and a lack of awareness of it continue to have a devastating impact on the lives of patients who routinely face discrimination.
And the dearth of qualified professionals – India has only 0.75 psychiatrists per 100,000 people – makes matters worse.
Nine years following founding Bipolar India, Mr. Nalawala spends a large part of his day checking messages on a group on Telegram. The group has members from all major cities, including Mumbai, Delhi, Bengaluru and Chennai, and organizes personal meetings regularly.
Mr. Nalawala says he wanted to create a sense of community, providing emotional and sometimes financial support to those living with the disorder.
“Our community can effectively avoid four suicides even though we are not trained in the mechanisms to help stop and avoid suicide,” he says. “In one case, we were able to raise money for someone who needed urgent hospital treatment.”
Patients often suffer because of a lack of access to health care, and although India’s laws require insurance companies to provide coverage for mental illness, companies rarely do, according to Nalawala.
Bipolar India Group has tried to bridge the gap and has launched a program that connects its members with organizations that wish to offer them jobs.
“We firmly believe that recovery from mental illness is not complete without rehabilitation,” says Nalawala.
picture released, Getty Images
People with bipolar disorder experience episodes of depression in which they feel extremely weak and lethargic
The group helped people like Triti Mishra, 57, who had to see 13 doctors before she might find a doctor who might explain her disorder scientifically.
“I don’t think the doctors I went to were really listening to what I was saying, I wanted to know what was happening to me and why,” says Mishra, who lives in Durgapur, West Bengal.
Mishra is a retired computer science professor who despite everything considers herself lucky and says she has a very supportive family.
She adds that joining a bipolar group in India changed her life: “I realized that I am not alone and this is very important. I can talk to other people and discuss coping strategies and share fears, guilt and insecurity,” she says. You don’t understand or accept these feelings, or you may not fully acknowledge them.”
Bipolar India Group also welcomes carers to join it.
Venkateshprasad Narayan Iyer and his wife, living in Mumbai, are caring for their 31-year-old daughter who has bipolar schizoaffective disorder. They joined Bipolar India because they felt they had to “take care” of their daughter and themselves.
“We realized that apart from dealing with the emotional, spiritual and financial crisis for your child, you also have to take care of yourself. A caregiver also falls into depression but needs to continue to lavish love and compassion towards his child, but also has the desire to continue life”.
picture released, Venkateshprasad Iyer
Venkateshprasad Narayan Air and his wife take care of their 31-year-old daughter
But this is not easy in the absence of reliable and affordable institutional facilities to help care for patients, especially when they are going through phases of frustration and depression.
This means there is no respite for caregivers, who also worry regarding the future of the people they love.
Debashish Ghosh and his wife Supriya (names changed), who live in Gurgaon, have been a full-time caregiver for the past 15 years for their 38-year-old daughter with schizophrenia. But they still find it difficult to come to terms with the condition of their daughter being “a little different from the others”.
“She desires to have a profession, and she also desires to marry and have children, but her mood swings prevent her from settling in. She cannot have anything of what she desires, though she so desires it. Who will take care of her following us?” asks Mr. Ghosh.
The couple say that since their daughter was diagnosed, they have avoided meeting friends and family, fearing the societal outlook and absolute judgment usually applied to patients and their families.
Experts say people with mental illness are being stigmatized because information regarding bipolar disorder and schizophrenia is still scarce in India.
“There is more openness and acceptance regarding depression than in the past,” says Dr. Milan Balakrishnan, consultant psychiatrist and former secretary of the Bombay Psychiatric Association. “But depression is spoken of in a general sense and people may not really understand the illness being discussed.”
Dr Balakrishnan says initiatives like Bipolar India can go a long and important way in changing these attitudes.
“Groups like this have a powerful impact because they provide support and testing in different situations, such as if a drug is stopped, or if people are testing substances that can lead to relapses…The group is a beacon of hope for these communities.”