Prevalence of schizophrenia in India is three per 1000 individuals. Rural India resorts to temple visits, religious rituals, shamanic practices, and native medicines as solutions (Source: Flickr, Ivan, Nightmare of Judah) Photograph: (Others)
Limited medical facilities, deep-seated prejudice and with no scope of finding employment, patients suffering from Schizophrenia live through a nightmare.
TRIGGER WARNING: Some sections contain information about Schizophrenia which may be triggering to survivors.
"It felt like a monster"
I must have been 10 years of age, trying to complete my homework in my room when I first sensed the abnormal presence. I felt a certain uneasiness in my stomach which grew into fear. I was sure of someone else being in the room with me. You know the kind of feeling when someone is standing behind you, watching you.. you just know someone is there. I shouted to my mother. She tried to assure me that everything was fine. I wasn't convinced. I checked behind the curtains, through cabinets, inside closets, under beds, in between every crevice I could see.
I did not know what I was looking for - a person? an animal? Both? It felt like a monster. I could only hear growling sounds. But I could imagine what it must look like -- red, dark eyes, a powerful blue-green, scaly but human-like structure. Its negative force could suck my soul.
I was scared to be in my own room. I started to run away from it. It started following. Not just that, the monster multiplied into many, worse forms. Taller, stronger, louder, scarier. Their voices getting strong enough, their words now made sense to me. Their fingers started to pinch my skin.
I tried to accustom myself with blaring loud electronic music in order to drown their voices and focus on what others could see but alas, I failed. These demons knew that they were stronger than me and decided to prove it; day by day their roars got louder, their shadows got darker and more defined, their fingers began to pull into my skin and hair until I gave in and asked what they wanted. They told me they were with me forever, their voices begged me to pick up a razor blade and tear apart my skin. I gave in.
These demons knew that they were stronger than me and decided to prove it; day by day their roars got louder, their shadows got darker and more defined, their fingers began to pull into my skin and hair until I gave in and asked what they wanted
My life was fully controlled by these monsters, I had no focus on anything as a 10-year-old girl should. I kept my thoughts to myself as I felt explaining my predicament would destroy the world.
Night after night, the demons would scream my name, urging me to the point of self-mutilation. My emotions were beaten out of me, leaving me a lifeless corpse ordered by things that only I saw, felt, and heard.
Months went by until my family started to see me as I saw myself. I was sent to counseling, given medication until my whole world was fuzzy, and told that I was suffering from Schizophrenia. 8 prescriptions, 3 psychiatrists, and three years later I was 13 and wanted the torture to end. I had been abused by the monsters every second of my life, having no time to breathe and relax, always having that stomach churning feeling that they were watching, laughing, criticising. I grabbed the nearest pill bottle and starting gulping. Finally, I will be set free.
That night my mother found me and I woke up vomiting in the hospital. I was given a charcoal tube to absorb all the drugs. The next day, I was sent to a psychiatric ward for two weeks, there I learned that the monsters hated being in there as much as I did. I pretended to be stable, I took my medication, and I was the ideal patient. I was released back into the real world to face my demons again, by myself. It had been a year since I was released, but still, nothing has changed.
"It wasn’t me--It was a friend that followed me around who could read minds"
I had a gift that I chose to tell nobody about. I could read minds. I could hear everything that was going around in the heads of people around me. I would just look at somebody’s face and know what their intentions were. I could also secretly listen to other people’s conversations.
Okay, I will admit this isn’t completely true. It wasn’t me--It was a friend that followed me around who could read minds. He would whisper everybody’s thoughts, plans, intentions into my ears, and I would be completely prepared for what was coming my way.
Soon after college, I landed a job in one of the top IT firms in the nation. My dream job - a chance to bring my years of knowledge and learning to practical use, to make a difference to the world by contributing to the field and an opportunity for personal growth. It was my first step on the climb to an upward graph. Things did not turn out how I expected to be.
My friend would go around the office and hear mean things being said about me.
'They say that the clothes you wear are funny'
'They find you very boring'
'One of them said you are ugly'
'They are planning to hack into your computer and delete your worksheets'
They were nice to me on the face, they did not know that I knew. My friend even heard my manager talk ill about me -- how he was conspiring to give credit for my work to another colleague to stop my career growth.‘The manager is going to give the credit of your work to the project partner and give you bad reviews’ he told me.
The place started to depress me. My quality of work started to degrade because of all the negative vibes I got from the people around me. I did not know what was my fault. The only justification in my head was that those are mean people. I was in the wrong place. I was depressed. I had breakdowns at work. I was bashed for not meeting deadlines. They were successful. I quit.
I was depressed but I gathered myself to find another job which was not very different. The same thing repeated. Then another job. And another. My parents were extremely concerned. They started seeking astrological help to do away with the evil eyes of my career. The priest claimed that "tumhare nakshatra bhaari hain (the position of the stars are causing the troubles in your life)." We started performing prayers and rituals as instructed by the priest but it hardly made any difference in the subsequent jobs.
We started performing prayers and rituals as instructed by the priest but it hardly made any difference in the subsequent jobs
People still talked behind my back to constantly judge me, mock me, hinder my progress. This reached such an extent that I had to watch each and every action of mine. Every sound I made while eating disturbed me. I analysed and re-analysed every word that came out of my mouth was since I did not want it to be used against me.
‘Don’t say that’ my friend told me.
At times, I used to confront my colleagues, shouting at them. And then running away.
'What has gotten into you? Are you high?' they asked me.
'This is the real me, you will pay' I blasted at them.
I was asked to resign.
My friend told me that I need to teach them a lesson.
I have changed 10 jobs in 8 years. Nothing changed. My parents forced me to see a psychologist. He told me, I had Schizophrenia. I realised it was not my friend, in fact, there was no friend. It was my mind. My mind was my worst enemy.
A terrifying, alternate reality
The above narrated stories are those of Lakshmi and Kasib. They are suffering from a severe mental disorder called Schizophrenia, a psychotic state characterised by hallucination inwhich a person can perceive a lot of things, sights and sounds even in the absence of any external stimulus. Explaining the trauma of a person suffering from Schizophrenia, Dr. Deepika Tiwari, Director of Anant Foundation has this to say: "They actually see and hear what others can’t, creating a sense of suspicion in their mind because their perceptions are absolutely real for them. Apart from these difficulties, people with Schizophrenia also are susceptible to others. The major problem lies with the psychotic nature of the disorder when they are not able to accept the fact that they have some problem."
"Envision living a nightmare while you are awake", is how E Fuller Torrey in his book Surviving Schizophrenia describes the challenges faced by a patient.
Since several patients experience sensory overload, they have a difficult time socialising with others. According to a young man suffering from Schizophrenia, “Social situations were almost impossible to manage. I always came across as aloof, anxious, nervous, or just plain weird, picking up on inane snippets of conversation and asking people to repeat themselves and tell me what they were referring to.”
Individuals also have a tough time making sense of incoming stimuli, making it impossible to focus on seemingly simple activities, regardless of their intelligence or education level. Another patient has to say this about his everyday peril: “I can’t concentrate on television because I can’t watch the screen and listen to what is being said at the same time. I can’t seem to take in two things like this at the same time, especially when one of them means watching and the other means listening. On the other hand, I seem to be always taking in too much all at the one time and then I can’t handle it and can’t make sense of it."
Auditory hallucinations are the most common type of hallucinations, and they can be intermittent or incessant. One of the patients, I interviewed said, “For about almost seven years—except during sleep—I have never had a single moment in which I did not hear voices. They accompany me to every place and at all times." To make the situation worse, the voices people hear are negative and accusatory.
"He /She is not the person that once was"
Unlike other mental disorders like depression anxiety and stress, the sufferers don't accept that they have some problem.
“They don’t enter therapy willingly unlike depression client. Even if they enter therapy, most cases start doubting the therapist because sufferers can clearly see the objects and hear the voices. They start believing that the therapist must enter a therapy not themselves. Whereas a person with depression or anxiety would walk for a therapy because they acknowledge the fact that they have some problem.” says Dr. Deepika.
“Since the person who suffers has no understanding of his or her illness, it is the ones who are close to the person who suffer most.” adds Dr. R Mangla, consultant psychiatrist at SCARF.
Schizophrenia is a chronic illness with a varying course. “The longer the duration of illness, more the damage it causes to brain structure and function leading to cognitive decline and deterioration of personality if left untreated. It ultimately boils down to the statement: "He /She is not the person that once was", says Dr. Mangla
The more common psychiatric disorder, bipolar affective disorder, is also characterised by symptoms of hallucinations and delusions. However, according to Dr. Bhoomika Rastogi Kar, Professor at the Centre of Behavioural and Cognitive Sciences, University of Allahabad, “It is different from Schizophrenia since it is characterised by distinct episodic illness with bouts of mania and depression. Schizophrenia also overlaps with schizoaffective disorder which is characterized by symptoms of Schizophrenia and mood disorder. However, Schizophrenia does not involve mood disturbance though it may involve difficulties with affect and expression of emotions which are transient."
Stigma, sin and Spirit
Poorly understood, this is one illness that has been misrepresented in the minds of people repeatedly in different forums from faith healers to fiction. The oddities in behaviour tend to be misunderstood as character flaws and they are victims of prejudice.
“This is probably the most abused illness in movies and soaps propagating several myths about it and exaggerating violence associated with it. All of these alienate persons with Schizophrenia farther from the society.” Dr. Mangla described.
According to doctor Mangla, stigma perceived by patients themselves takes a toll on their self-esteem and becomes a stumbling block in their lives.”
“Opportunities for employment is a big challenge. Housing for individuals with Schizophrenia and also families of persons with Schizophrenia is a major difficulty especially in the lower and middle-income groups in urban and semi-urban settings,” she adds.
Prevalence of Schizophrenia in India is three per 1000 individuals. While the people in the rural areas may not know the name of the illness, they are sure to identify a behavioural problem. Their explanatory models are different.
“If approached and offered medical help, they are willing to accept it and move forward. When there is not much improvement or when illness relapses they slowly lose interest and drop out. These dropouts depend on other factors such as distance from available services, transportation facility, the need for one or more able-bodied persons to accompany the ill person, loss of wages for one or more days if the accompanying persons are the bread winners and other incidental expenses including food are all some of the economic factors involved even if medication is available for free in government services.” Mangla explained.
Even when one identifies the area of trouble, a major chunk of the population in rural India believes in self-diagnosis
Even when one identifies the area of trouble, a major chunk of the population in rural India believes in self-diagnosis.
“I still get patients who come from rural areas whose families have been resorting to temple visits, religious rituals, shamanic practices, and native medicines year on year, allowing the disorder to fester and worsen, and finally resort to medical treatment as a last resort", Gauthamadas added.
Schizophrenia is a brain disorder and not a result of past sins, evil spirits or black magic.
Doctor Deepika illustrates the situation with a very typical case from Rural Rajasthan. Rajveer, a 21 year old, was seen talking to himself and shouting without any reason. In one instance he was spotted crying when whole community was watching the cricket match on a common TV in Panchayat bhawan. Many people in village observed him making odd faces like some meme. They assumed that he is possessed by some evil spirit and took him to an occultist and tried a couple of exorcism techniques with all the painful condition where he used to be kept in chains, burnt by supposedly holy but actually very hot iron stick, and a lot of ashes were given to him to eat. His parent tied a number of amulets on his arm for the recovery. Still, he is regularly visiting the occultist and parents are waiting for the evil spirit to leave his body.
There are many such cases like Rajveer in our country who are thought to be possessed and nobody realises that they are suffering from a severe mental disorder and need medical care.
80 per cent of quality medical care available for mental health is in the private institutions, which is costly and out of reach of common man
How far does India has to go?
Doctor Deepika presents a statistical insight of the availability of resources for mental health in India. “In India, for every 1 million people, there are just 3 psychiatrists and even fewer psychologists. It is noted that Indian researchers have meaningfully engaged themselves in Schizophrenia research. However, we have failed to provide institutional facilities to the people suffering from Schizophrenia. Hospitals are mostly situated in urban areas. 80 per cent of quality medical care available for mental health is in the private institutions, which is costly and out of reach of common man.”
There is also no insurance coverage in these cases. “The WHO Mental Health Atlas 2011 states that the government's expenditure on mental health was only 0.06 per cent of the total health budget.”
Moreover, one has to put an end to the criminalisation of people with Schizophrenia. Mental health patients are being treated as criminals and sent to prisons rather than hospitals. With the right treatment and empathy from family and peers, their situation can be improved to include them in a normally functioning life.
As Elyn Saks, a survivor and Associate Dean and Orrin B. Evans Professor of Law, Psychology says, 'They are not schizophrenics, they are people with Schizophrenia'.