Part One
He saw Jesus. He was on the streets of Rhode Island in the US, running away from his fears, looking for respite. He was overtaken by paranoia. He met a man who asked him to go to a nearby church. As he entered the church, he saw a jug of water hanging in thin air. “You won’t believe me, but it was the same jug of water I had seen in another church few weeks back,” Vikas* recalls. And then, he saw Jesus.
Vikas sat down in the church and wailed his heart out. He arranged the chairs, spoke to the parishioners and the priest. He doesn’t remember the conversations.
Just earlier that bright summer day in 2012, Vikas, then a 24-year-old post-graduate student at an engineering university in the USA, had been mercilessly cyberbullied. One of his collegemates from his graduation days in Chennai, he suspects, hacked into his Facebook account and wrote a ‘note’ which ‘confessed’ to nasty things he had never done.
Vikas was paralyzed when he saw that, and could not even bring himself to delete the post for several hours. He left and roamed around the streets of Rhode Island, not knowing where exactly he was, not comprehending what was happening around him. He spent hours on pavements, and that’s when he saw Jesus. He returned to his dorm later in the night.
With the help of family in the US, Vikas managed to get back home to Chennai in a few days. Even through his journey, he says he felt like he fought through sandstorms and hurricanes.
Back home in Chennai, his helpless and concerned parents could not understand what was happening to him. He said he wanted to take a walk, and they let him. He took about 24 hours to return. He walked all the way from his home near T Nagar to Besant Nagar, and then to Teynampet.
A recent image of Vikas (identity masked on request)
“I bumped into a vehicle and the rear-view mirror broke. The driver was screaming at me, but I was just looking at the sun. People gathered around me, and I was getting paranoid. Cops came and took me into their jeep, but could not get any answers from me. They just dropped me at a spot in Kotturpuram and left,” he recounts.
“They just dumped me there. Can you believe that? It makes me so angry when I think about it,” he fumes.
Vikas says he sat on the pavement on Gandhi Mandapam Road all night, without moving an inch. He got drenched in the rain, came to his senses in the morning and walked back home.
Vikas has since been diagnosed with schizophrenia and the above sequence of events – his version - is believed to be his first set of psychotic episodes. Five years since, under severe medication and laboring through the stigma attached to mental illnesses, Vikas is now patiently attempting to lead a peaceful, happy life.
India’s mental health burden
The burden of mental illnesses in India is enormous. According to a 2005 government report, at least 70 million people in India suffer from serious mental illnesses. WHO’s 2017 estimates state that 7.5% of the population in India suffers from depressive and anxiety disorders -- that’s about 94 million people.
It is believed, based on data analysis and anecdotal evidence, that India has a 77% deficit of psychiatrists – with just 1 available for every 200,000-300,000 people.
Talking to me at the sidelines at the Global Health Assembly in Geneva in May 2017, Dr Shekhar Saxena, Director of the Department of Mental Health and Substance Abuse at WHO, who is now leading the ‘Depression: Let’s Talk’ global campaign, says, “Specific thing about India is that most people with mental health do not get any treatment. There is a big gap between the need and supply of services.”
Let's Talk Depression - Campaign corner at World Health Assembly, Geneva
Dr Tarun Dua, Medical Officer – Evidence, Research and Action on Mental and Brain Disorders, from the same department of the WHO in Geneva, says that the main challenge in India is the treatment gap, which is very high: “People who should be receiving medical treatment are not getting it, and it’s high, upto 75% , and in the case of severe mental health illnesses it can be as high as 90%.”
“Many people do not even know they have a mental health issue, but even if they do decide to seek help, they do not get effective treatment. They have to go to the nearest mental hospital or a GP, which is not the best place,” Dr Saxena adds.
There aren’t enough psychiatrists in India or awareness about psychiatry among the people.
However, it isn’t just the treatment gap which should worry us, as Vikas's story and several other interviews and experiences show. Social workers and people with mental illnesses argue that as the general awareness about mental health in India increases, the existing flaws in psychiatry – often characterised by overmedication and lack of informed consent – could metastasize into larger problems.
Drugged and dazed: ‘Zombies’ of polypharmacy
What Vikas experienced in the years after his initial psychotic episodes urges one to question if his illness was the worst thing that happened to him. The ‘treatment’ comes pretty close.
After his psychotic episodes, Vikas was taken to a psychiatrist in Chennai. Recommended by a family member, he seemed to have a good reputation. But over the next three years, the psychiatrist doused him in medication.
TNM has access to Vikas's entire medical history since 2012, which he shared willingly. He was started off on three different anti-psychotics, one pill to treat narcolepsy (daytime sleepiness), one muscle relaxant (also used to treat Parkinson’s), one pill for high blood pressure and one pill for depression and anxiety.
After a few months, Vikas was prescribed another pill used for treating sleep disorders. Later, along with a minor change in the choice of anti-psychotics, the psychiatrist also added an anti-allergen and a pill to treat panic and anxiety.
At one point, he was on three different anti-psychotic pills; two pills to treat depression, anxiety and panic; one to treat sleep disorders; one muscle relaxant and also drugs to treat nicotine dependency and alcohol withdrawal. Vikas had become a heavy smoker and drinker by then, by his own admission. It is to be noted that many of these pills were meant to treat not the illness, but the side-effects caused by the drugs used to treat the main illness.
That was his condition for three years, and it wasn’t until 2016 that his medication was reduced drastically after he moved to consulting with another doctor.
Social workers and patient-groups argue that polypharmacy, which is the use of several drugs to treat illnesses – like in the case of Vikas, is rampant in India and is often administered irresponsibly.
Polypharmacy isn’t always bad, but recommending it irresponsibly and indiscriminately – especially in a country like India where medical literacy is low and doctor-patient relationships aren’t balanced – has been questioned. Polypharmacy can end up worsening the medical condition of the patient further instead of treating it.
In an online survey conducted by two psychiatrists at the Post Graduate Institute of Medical Education and Research, Chandigarh, between 25-40% psychiatrists accepted that they indulge in polypharmacy.
“In terms of management of bipolar disorder in the maintenance phase, combination of a classical mood stabilizer and antipsychotic medication was used in about 40.5% of patients and this was followed by the use of a combination of two classical mood stabilizers (21.04%) or combination of two classical mood stabilizers and an antipsychotic medication (14.71%),” the research notes.
In one survey done in Jammu, polypharmacy in prescribing anti-psychotics was seen in more than 72% of the cases, and a Lucknow-based survey clocked 55%. To treat depression too, polypharmacy is practiced, even if infrequently.
The Indian psychiatrist community knows that polypharmacy is a problem, which is why there are calls from within to use medication judiciously. Many psychiatrists also openly accept that it’s a challenge.
“Polypharmacy is an important problem, yes,” agrees Dr. Thara Srinivasan of Schizophrenia Research Foundation (SCARF) in Chennai, which is among the few organisations in India that have been vocal against the indiscriminate use of medication.
“There could be many reasons for it,” Dr. Thara continues. “One is that a doctor may genuinely feel from experience that so many drugs are required. There is also the influence of pharma companies. Every other day I have medical reps coming and telling me that this drug is good, and that it works. There are also other ways in which pharma companies influence doctors, like personally reaching out to them with international trips. Recently, I went for a conference where except me and a colleague of mine, everyone was there sponsored by a pharma company.”
She, however, adds that medication cannot be dismissed. “For many of us, our experience has shown that medication has worked. But I am not in any way defending polypharmacy. When people say that they are completely in a daze or knocked out, then it is a result of polypharmacy, and not just one drug.”
“I am not saying it in defense of psychiatrists, but the anti-psychiatrist lobby and so-called activists are making too much of an issue out of it,” Dr. Thara adds. Most activists and anti-psychiatry advocates would agree with Dr. Thara that medication cannot be ignored.
Sitting with me at a café in Chennai recently, Vikas recalls those days. In those three years, he put on weight and slept 15 hours a day. He could not concentrate on anything.
“I was broken, I was not myself. I could not even get to office at 10 30am even if I managed to get a job. I was just walking around in a daze,” he says, describing a state which many social workers call ‘Zombeism’. The changes to his body further pushed him into depression – and there was no counselling for that.
Sustained polypharmacy over years could push patients into an unnecessary dependence on medicines.
Bapu More, Pune
Fifty-two-year-old Bapu Baliram More walks in with a calm demeanor and smiles as he sits down to chat with me. We’re at Pune-based Bapu Trust’s Community Wellness Centre ‘Dwi’, inside Sonawane Hospital in Bhavanipeth. He speaks slowly and clearly. A B.Com dropout, Bapu was diagnosed with schizophrenia after he got married, and has been under high doses of daily medication for 20 years.
Almas Asif Momin, a counsellor and Senior Program Assistant with the Bapu Trust, says, “Twenty years is a long time to be on medication. Even if he wants to get off them, he is unable to.”
“Earlier I used to take four pills in the morning and seven-and-a-half at night. Now I take two in the morning and 5 at night,” Bapu says, jogging his memory and counting on his fingers.
“I don’t like to take medicines, but I have now become dependent on them. I feel drowsy, I sleep too much. Sometimes I don’t know what is happening around me,” Bapu says, adding that he has tried to get off medication, but that his symptoms return.
According to Bapu, what he has benefitted from the most in the past 20 years of therapy are the psychosocial interventions, not just pharmacological -- group therapy, counselling and mind control techniques, not just medicines.
The colonised mind
So, why are people with mental illnesses being drowned in medication?
“It has to do with our colonial past,” says Dr. Bhargavi Davar, Director of Bapu Trust. For nearly two decades now, Dr. Bhargavi has been working at the grassroot level to help people with mental illnesses recover in a holistic manner by enhancing their emotional well-being, and has been critical of the present model of psychiatry.
Dr. Bhargavi argues that much of Indian psychiatry is rooted in the British era, when the idea of dealing with mental illness wasn’t to treat it, but get it out of our sight.
“The idea of a person with mental illness being a threat to self or threat to others is based on a legal entity founded 200 years ago, and it emerged out of the colonial attempts to curb insanity from public spaces, and curb beggary etc. It was about social control. The format remains criminal-penal,” Dr. Bhargavi says, emphasising that their experience has led them to believe that the perceived threat from the mentally ill is highly overestimated.
Dr. Bhargavi Davar, Director, Bapu Trust
She points out that British colonies in South Asia have a worse mental health system.
“Take Nepal for instance, they were never colonised. They are no institutions, no mental health laws. There, people are free. They have one hospital where people can visit and take medicines if they want, or get back to the street if they want. A lot of things can be done because the mindset is not there that only medicines will work,” she shares.
Dr. Bhargavi, however, hastens to add that she is not completely against the use of medication. “I have seen psychiatry work, but it has to be low-dosage, with few medicines prescribed and over a short period of time. Anything outside of this for me is polypharmacy, and not good,” she says, noting that she has seen prescriptions with 11 or 15 medicines at a time.
“Doctors prescribe many medicines because they are insecure and fearful, they are not sure what works. They just don’t know what will work, so they put them all together. But polypharmacy causes Zombeism, it deskills people and puts them on disability pension,” she laments.
How difficult is it to be not on medication?
Abhijeet Gawde doesn’t make eye contact. He is restless and speaks in short bursts, not always coherent. I meet him at the ‘Pehel’ Wellness Centre in Bharat Ratna Swa Rajiv Gandhi Hospital at Yerwada in Pune, where he has been meeting Bapu Trust’s social workers for the past year. He too suffers from schizophrenia.
One-and-a-half-months ago, he walked into the clinic and insisted that he be taken off medication. The social workers took him to another psychiatrist for a second opinion. The latter agreed to wean him off the drugs. For weeks now, Abhijeet has not taken any medication.
Just as I mention the word ‘dawai’ (medicine in Hindi), he blurts, “No, I don’t want any medicines. I don’t take them.”
Pehel Wellness centre
It takes a few seconds for us to get him back to the conversation again. Ratna Byagari, a Junior Project Assistant who works with Abhijeet on psychosocial interventions, asks him again, why he doesn’t like medication.
“My back droops when I walk, if I am on them. I don’t feel good. I am not able to work. I want to work and make money for my mother,” he says, and starts getting restless.
I ask him if he likes music, he looks at my phone and asks me to play some. I play ‘Jee Le Zara’ from Aamir Khan’s Talaash, he recognises the song in less than a second and says, “Zabardast gana hai,” and starts listening to it. He is alert and intelligent. He just doesn’t fit society’s idea of ‘normal’.
Ratna tells me that few of Abhijeet’s symptoms have returned since he stopped taking medicines: “He has no eye contact, and he cannot concentrate. But he doesn’t like being dazed. We are monitoring him closely with family visits, non-formal therapies and counselling. The psychiatrist is also keeping a close watch. We will see how it works out.”
Why not just put him back on the medicines?
“We can. But he doesn’t want it. With medication, there is less problem for us, it’s easier for us. But he doesn’t want it,” Ratna shoots back.
Ratna with another client
Her colleague, fieldworker Reshma Choundkar, says that Abhijeet has had a difficult childhood – with a depressed mother and alcoholic father – and his emotional pains are linked to that. “He wants to earn and live on his own terms. He does not want medicines because he wants to work. We think just a bit of medicine is enough for him so he can work. We have to enable him to work.”
Vikas agrees that he felt better when his medication was drastically reduced under a new doctor. Before he forced his parents to agree to let him visit another doctor, he had stopped taking medicines for about 10 days: “I felt good. My thoughts were better, I felt there was a flow in my life. That’s why I was sure I don’t need medication.”
Then why did he get back on them?
“I was not given a choice.”
*Names changed.
Edited by Sowmya Rajendran