‘I Was Diagnosed With My Mental Illness After 26 Years’

The mean delay in diagnosis of psychiatric disorders is between 5-10 years. That’s many lost years for a patient

For Vijay Nallawala, the onset to his bipolar disorder was as early as age 14.

But at that time, the town that the teenaged boy had been staying in - Vasai, some 50 kms north of Mumbai - had little awareness and few professionals.

Although Vasai is now a throbbing city, it took more than two decades for Vijay's bipolar disorder to be finally recognised.

It went undetected for a span of 26 years... until I hit mania. It was then, that my bipolar disorder was first diagnosed.

Vijay Nallawala

The Diagnosis

Before he hit peak mania, most of Vijay Nallawala's symptoms: his severe depressive episodes, mood swings, minor ups and downs had remained undetected.

For 26 years, his condition had been left undiagnosed... invalidated.

Twenty six years is a long time. Twenty six years of internal suffering? Even longer.

I was 40, and had to be hospitalised because I was in severe mania, with psychosis accompanying it...

Vijay Nallawala

For a man who had been battling his inner demons, all through his teen years, twenties and thirties, help finally came, but a little late in his life; a life that could have been different, had he been diagnosed in time. Vijay is now 57.

The later the diagnosis, the more challenging it becomes to recover from the mental illness.

Vijay Nallawala

When Vijay was diagnosed, in year 1993, there were no affirming messages about owning your mental illness, no social media, no communities to which we could he could belong. Vijay thought he was the oddball. As years passed, he began to realise he wasn't the only one to have bipolar disorder.

Vijay has been in remission for the past five years, and now educates people about bipolar disorder in the form of a website (www.bipolarindia.com), speaking engagements and social media. The community that Vijay could not find when he was first diagnosed, he has built for others suffering from the illness.

Would life have been different had he been diagnosed earlier, I ask him? Certainly. "My father remained undiagnosed all his life. Had his illness been known, I would have been checked for bipolar much earlier."

'The Boarding School, and A Six Months Delay Proved Lethal For My Schizophrenia'

Richa is 47 now. But it was when she was 17, studying in a prestigious Dehradun boarding school, that she first started showing signs of mental illness. Looking back, Richa, and her father, both believe that living away from home, in a boarding school, harmed her irreparably.

I was 17 years old when my uncle had a sudden heart attack and passed away. That had its repercussions... I had to dictate my class XII exam, because I just could not write. My hands and neck were stiff because I was in a state of shock.

Richa, Shizophrenia Survivor

When Richa's father got to the boarding school, he saw Richa look haggard... her speech was not comprehensible. But he had been misinformed by the resident psychologist in the boarding school that this was a one-off incident and needed no further intervention.

The family then moved on. Richa got admitted in the prestigious MS University in Baroda to study art history. But the episodes kept getting worse. Richa distanced herself from her roommates, with whom she had been friends earlier. "I felt as if I had no friends," says Richa.

The six months I stayed in that college (MS Baroda)... were lethal for me. It was the time when I had just discovered I had schizophrenia. Instead of spending those many months at a college, I should have spent time at a hospital to treat my illness, which I didn’t do.

Richa

The illness was further exacerbated when Richa was sent to Dehradun for a homeopathic treatment.

I stopped my allopathic medicines. That caused a lot of problems in me. I shouldn’t have changed my medicines from allopathy to homeopathy.

Richa, Living with Schizophrenia

Richa's illness kept getting worse. Her neighbours began to fear her. At home too, Richa's family began to hide knives from her.

After being admitted in NIMHANS for nine months, Richa, along with her family, moved to Pune, solely because of the NGO Schizophrenia Awareness Association and the rehabilitative work they were doing with patients of the mental illness. Richa now teaches dance, games, and English at the institute, but the episodes of schizophrenia haven't stopped. In moments of darkness though, her mother comes as light.

Whenever I get hallucinations at home, I ask my mom: is so and so here? and she says, “No they are not here”. And then I automatically feel a bit better. Mama’s presence for me is a great watch. I get hallucinations that someone is lying down on my bed. When I am in a room, I get hallucinations that someone is sitting outside my window. There are also some strange hallucinations of some weird people, someone called Bharati Nangachawal and Surya Makhanchawal. These are all strange hallucinations I first got when I was in Bombay. They are fixed...these hallucinations. They don’t change. For me, they are like toys.

Richa

Moved by his only daughter's plight, Richa's father, Amrit Bakhshy went on to become a director at Schizophrenia Awareness Association, and even wrote a book about caregiving and mental health.

Looking back, Richa feels the switch from allopathy to homeopathy really worsened her condition, irreparably.

The homeopathy was one big error we made... But one thing I really hope for is that I get my mental freedom. A person in my state of being craves to be free and independent.

Richa

'It Took 11 Years For Me to Get Diagnosed And The News Spread Like Wildfire in my Hometown'

"It was in 1984 that I had my first depressive psychosis," Jitender Goyal, 62, tells me.

Thereafter, three-four years were normal. But in 1995, Jitender again had a bout of depression.

That year, Jitender was told that it was because of family interaction and stress, that this was happening to him.

A year later, in 1996, after a renowned doctor came to Ludhiana, the city in Punjab where Jitender stays, he got to know he had Manic Depressive Psychosis (what bipolar disorder used to be called).

When my illness came out, the news had spread all over Ludhiana that I am suffering from depression! (laughs)

Jitender Goyal

Jitender still believes that the stigma around bipolar is huge in non-metros, and the awareness is lacking.

"Those who are suffering think they are okay, and that the mental illness is 'slapped onto them' by doctors."

"The agriculturists believe less in medication, but in drinking away their illness," he says.

Even though Richa, Jitender and Vijay's stories are different, one thing is common - their illnesses were further exacerbated because of years of delay in the diagnosis. Not just that, their quality of life, got impacted in the process.

'Mean Delay in Diagnosis of Psychiatric Disorders is Between 5-10 Years'

Dr. Sunil Mittal, Director, World Federation for Mental Health says delays in diagnosis are common in the case of psychiatric disorders.

Psychiatric disorders are generally administered late, usually because the psychiatric disorders will manifest as behavioral or mood abnormalities, and the delay in the outset of symptoms causes a person to seek help late. The mean delay is found to be between 5-10 years.

Sunil Mittal, Psychiatrist and Director, World Federation for Mental Health

The lack of awareness and inability to understand visible symptoms also contributes to the delay.

Lack of awareness causes delay in seeking help: a person not being aware, family not being aware, friends not being aware. Stigma is also one of the barriers to care. Third is the lack of medical facilities or professionals. There could also be a person who is psychotic, who doesn’t believe they have a mental illness.

Sunil Mittal, Psychiatrist and Director, World Federation for Mental Health

“Like any other illness, when diagnosis is delayed, or treatment is delayed,there is a worsening of the condition. Especially in cases of severe mental disorders like bipolar disorder and schizophrenia. Since these involve the neurons in the brains, there are neuronal changes that occur when the illness gets worsened.”

Symptoms to Look For

Dr. Mittal can't stress enough on people to be aware about their own emotional condition. He also advises friends and family members to be alert.

1. Be aware. Any abnormalities in a person's behavior,which means talk, emotions, general behavior, mood, sleep disturbances, appetite disturbances, or in young people, academic decline, could all be symptoms of a mental illness.

2. If a person is sad, irritable, withdrawn, quiet, or if they are aggressive, violent, making suicidal attempts, slashing wrists, causing injury to self or others, demonstrating abnormal behavior towards animals, abnormal sexual behavior, they could be suffering from a mental illness.

Dr. Mittal also cautions against the myths that prove to be dangerous in the case of a psychiatric illness.

"There is a myth that psychiatric medicines are addictive or sedatives." This myth causes many to not take their medicines in the prescribed dosage. In Jitender's case, even though he had been asked by doctors to continue the dosage of medicines, his mother ordered him not to. "These western medicines are bad for the stomach and addictive," she said. That too created an unnecessary delay in Jitender's treatment.

There's another myth that homeopathy can cure all psychiatric disorders. About this Dr. Mittal says, "Every pathy must know their limitations. Homeopathy cannot treat psychiatric disorders, especially not schizophrenia."

Time Lost

Many people spend years of their lives in disability, and it's measured by something called DALY, or disability adjusted life years.

The World Health Organization (WHO) estimates that 7.4 percent of global DALYs are caused by disorders in the mental and behavioral disorders category. That's a lot of years gone by.

Years spent in agony, pain, confusion, and silence. Years of productive life missed. That's the huge cost to a late diagnosis in mental illnesses. And one that can only be fixed with proper awareness and removal of stigma.

"If a delay in treatment occurs, the normal period of growing up is missed," says Dr. Mittal. He says most psychiatric disorders begin between the age of 15-25. If a delay in diagnosis happens, not only is adulthood lost, but precious childhood too. One whose price no young, promising soul should have to pay.