Living with bipolar disorder is not easy. Many people do not understand this condition and why patients suffering from this disease experience discrimination. Urvashi Sarkar writes that the online bipolar disorder community in India is now trying to change these attitudes.
When Vijay Nalawala was 40, his family noticed that something was wrong.
“I’m suddenly happy, and then suddenly depressed. I wake up early in the morning and write very dark poetry. The fluctuations are usually very sharp and sudden,” he says.
Of course, this is not the first time Nalawala has started experiencing these symptoms at the age of 14.
During this time he sought medical help, and in 2003, he was diagnosed with bipolar disorder, which causes people to experience severe mood swings, and the person may suffer from depression, which can make him feel very weak or lazy – or conversely he may feel energetic or even overweight Feels.
Nalavala, now 60, said he has been stable for the past five or six years. But his suffering made him realize the need to raise awareness about the disease.
In 2012, he started blogging about this topic. A friend encouraged him to set up a website called Bipolar India, which raises awareness about bipolar disorder, collects data on mental health and provides a platform to share their experiences with others in that condition. Today, the site has over 500 members.
Data from the 2016 National Mental Survey of India show that at least 0.3 percent of Indians suffer from bipolar disorder. But stigma and lack of awareness about it can have a devastating impact on the lives of patients who routinely face discrimination.
The shortage of qualified specialists – there are only 0.75 psychiatrists per 100,000 people in India – makes things worse.
Nine years after the founding of Bipolar India, Mr. Nalawala spends most of his day checking the news on a team in the Telegram. The committee has members from all major cities including Mumbai, Delhi, Bangalore and Chennai, and regularly organizes private meetings.
Mr. Nalawala, who says he wants to create a sense of community, is passionate about people living with the disorder and sometimes donates money.
“Even if we are not trained in ways to help stop and avoid suicide, our community can effectively avoid four suicides,” he says. “In one case, we were able to raise money for someone in need of emergency hospital treatment.”
Patients often suffer from a lack of access to health care, and although India’s laws require insurance companies to provide insurance for mental illness, companies rarely do, says Nalawala.
Bipolar India Group has launched a program to try to bridge the gap and connect its members with companies that want to employ them.
“We firmly believe that recovery from mental illness is not complete without rehabilitation,” says Nalawala.
The team helped people like 57-year-old Triti Misra, who had to see 13 doctors before he could find a doctor who could explain his disease scientifically.
Misra, who lives in Durgapur, West Bengal, said, “I think the doctors I went to did not really hear what I was saying and wanted to know what was happening to me and why.
Misra is a retired professor of computer science.
He adds that joining the bipolar group in India has changed his life: “I felt that I was not alone, that it was so important that I could talk to others and discuss coping strategies and share fear, guilt and insecurity,” he says: ” Families, you may not understand or accept these feelings, or you may not fully agree with them. “
Bipolar India Group also welcomes observers to join.
Mumbai-based Venkatesh Prasad Narayan Iyer and his wife are caring for their 31-year-old daughter suffering from bipolar disorder. They joined Bipolar India because they thought they should “take care” of their daughter and themselves.
“In addition to dealing with your child’s emotional, spiritual and financial crisis, we realized that you also need to take care of yourself. A caregiver is also prone to depression, but must continue to have love and compassion for his child.
But this is not easy in the absence of reliable and affordable institutional facilities to care for patients, especially when they are going through stages of frustration and depression.
This means caregivers have no rest and worry about the future of the people they love.
Debashish Ghosh and his wife Supriya (name has been changed), who lives in Gurgaon, have been full-time caregivers for their 38-year-old daughter with schizophrenia for the past 15 years. But they still find it difficult to understand their daughter being “a little different from the others”.
“She wants a career, she wants to get married and have children too, but her mood swings. She can not get anything she wants. Even if she wants to, who will take care of her?” Ghosh asks.
Since the couple found their daughter, they have avoided meeting friends and family for fear of the social outlook and absolute judgment that is commonly applied to patients and their families.
Experts say mentally ill people are stigmatized as information about bipolar disorder and schizophrenia is still scarce in India.
“There is more openness and acceptance about depression than in the past,” says Dr. Milan Balakrishnan, a psychiatrist and former secretary of the Bombay Psychiatric Association. Is being discussed. “
Initiatives like Bipolar India can go a long and important way in changing this attitude, says Dr. Balakrishnan.
“Groups like this have a powerful impact because they provide support and testing in different situations, such as when a drug is discontinued, or if people are testing for substances that can lead to relapse … the group is a beacon of hope for these communities.”
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