Living with paranoid schizophrenia

A former journalist recounts her difficult journey from fear and confusion to diagnosis and recovery

As tears rolled down my face, my husband asked, “Should I love you like a poodle?” I hoped he would urge me to stay and reassure me that everything was fine and that he loved me and our five-year-old daughter. I was being sent to my mother’s house without my daughter. I felt undesired and unfit to be a good mother and caring wife.

I had entered the bathroom quietly a day earlier, holding a knife in my hand, closing the door behind me and frantically slashing my wrist. I was certain that my presence would be harmful to my child, husband, and the world. I had tried to gain access to the terrace of our building two days before that, planning to jump to my end. My in-laws were enraged, accusing my parents of giving birth to a ‘worm’ like myself. My father-in-law said I should do such ‘stunts’ at my parents’ home and bring a bad name to them instead. My mother was summoned to our house.

My mother banged on the bathroom door but I had lost my ability to reason. I believed my death was necessary for world peace. I was hallucinating and spoke incoherently. I was accused of lying. Unfortunately, I was in a make-believe world.

After marriage

I got married at 24. It was arranged. The new life was incomprehensible.

My mother-in-law was self-obsessed and nothing could please her. When I cooked good food, she would feel insecure and ask me to throw it away, claiming she had found worms in it. When questioned about her unreasonable behaviour, she would play the victim.

I was not allowed to join my husband, who was working in another city. He would come to see me on weekends. My in-laws, who were in their early 50s, claimed to be in their ‘old age’, and demanded my support. My husband did not find anything wrong in the present arrangement.

I was subjected to more humiliation and harassment. After much persuasion, my husband agreed to take me with him. I began looking for a job as a journalist. I had briefly worked as a sub-editor with a well-known daily before I got married.

Whenever my mother-in-law learned I had a job interview, she would pretend to be sick and call me back home. My brother-in-law and my parents-in-law would ridicule me for the smallest of reasons. They would complain to my husband that I had shrugged off my responsibilities, or was arrogant and rude. This was the polar opposite of what I was. Strangely though, they would praise me in public.

By now, I was convinced that my in-laws hated me because I lacked good qualities. My husband’s silence hurt me the most. But it was my love for him, and my parents’ upbringing that kept me going.

When my daughter was a few months old, I was burdened with household chores and hardly got a chance to nurse her. At the same time, my in-laws accused me of neglecting her. I was shaken from within. My worst mistake was not speaking out against the abuse.

Meanwhile, my brother-in-law married a dentist. While the new bride was given special attention, abuse against me grew multi-fold. This was my breaking point. My mind was a complete mess. I was perplexed how my in-laws could act so differently with their two daughters-in-law. There must be something seriously wrong with me. My self-esteem began to plunge and I felt worthless. My mother believed that taking me back home would invite gossip, and so, I could not confide in her.

Then it hit me

Three years later, in 2000-2001, I started imagining things. I could hear things that weren’t being said and started hallucinating. I had gone from being an upbeat young woman to a drab soul. I had become a walking corpse, as my mother-in-law would put it. I would freeze at every taunt from my in-laws, believing that giving back would bring disgrace to my family.

I imagined that people were gossiping about me. I began to get sceptical about the simplest of things. At times, I would suspect that my food was poisoned and that a transmitter was implanted in my copper T. I even began to mistrust my two-year-old daughter. I was hearing voices in my head.

Know who I am?

I had lost interest in my appearance. My hair was always unkempt, my clothes shabby, and I was lost in my thoughts. I had even stopped caring for my toddler. I would sometimes rush out of the house, leaving her alone, telling strangers on the street that I was a wonderful person and asking them if they knew anything about me. I constantly sought validation.

One time, I had a hallucination that I was to blame for others’ miseries, and that both prominent and common people were dying because of me. In another episode, I imagined that people could read my mind, and the very thought was unbearable. I felt I was a bad omen, that anything I said or did would spell doom for the world.

I assumed that all news in print and the electronic media was aimed at me. For instance, there was a headline about ‘a local event’ becoming ‘a global phenomenon’. I believed I was the ‘local event’, and since people could read my mind like an open book, I had become a ‘global phenomenon’. I felt suicide was the only option to save my family and the entire universe from a person like me. It was during this phase that I attempted suicide.

Sensing that this may cause a threat to them, my husband and in-laws took me to a lawyer to make sure that their interests were protected. They made me declare to the lawyer that whatever extreme steps I was taking were my own responsibility. I was left all alone. There was nobody to understand and support me. I had already started cutting myself off from my friends.

Turning point

I visited multiple doctors and took many medicines. The turning point came in 2003 when my family took me to Nimhans in Bengaluru. The psychiatrist diagnosed me with paranoid schizophrenia. It is the most common form of schizophrenia and is marked by delusions (such as being chased, followed, or poisoned) and
hallucinations (such as hearing voices). Catatonic, disorganised, and residual are some other forms of schizophrenia.

We were unaware of this illness before. I used to think that people with mental illnesses roamed around on the streets in rags and ‘troubled normal people’.

“What is the cause?” my mother wanted to know desperately. The doctor told her the trigger was immaterial and that they should focus on getting me started on medication. All I wanted to know was whether I could lead a normal life again. We were assured by my psychiatrist that schizophrenia was manageable and I could go about my everyday activities. With proper medicines and counselling, I began to recover within a month. It has been 18 years since I started medication.

On some occasions, I tried stopping the medicines on my own, without consulting my psychiatrist. I was feeling completely fine. Also, a friend of mine, who is a naturopath, said taking medicines for a long time would hamper my physical health. It was a recipe for disaster. I started hallucinating and the suicidal thoughts returned. I attempted suicide again.

My family on both sides has started understanding the illness better. My parents and my husband regularly ask me if I am taking medicines. I also know when I am having a relapse — on those days, my family continually asks me to sit down and reassures me that I am safe. But I lose self-control. I can’t believe them.

In these 18 years, I have come across only two others like me. Perhaps the stigma around mental illnesses keeps us from connecting. A woman in my apartment block with a similar problem refused to take medicines. She would sometimes dance in the balcony, and sometimes, be admitted in the hospital for days. I tried talking to her but she was a bit violent, so I backed off. Another time, it was the sister of a domestic worker at my house. She feared that she was being chased. I offered to take her to hospital many times but to no avail. She killed herself.

My friends have been a source of strength. One helped me find a job in Bengaluru with a leading newspaper. Another offered to arrange a free house for me and my daughter so I could leave the stifling atmosphere at my home.

Though I am unable to take up a regular job because of family constraints, I do whatever I like and love. I see my psychiatrist regularly and take my medicines on time. I am now able to speak for myself. I am back to my chirpy, effervescent self. My chest swells with pride when I see my daughter, now in her early twenties, doing well in college. I am trying to acquire new skills like painting and gardening. At times I take up freelance writing assignments.

I have become sociable again. I have reconnected with trustworthy friends. One of them encouraged me to share the story you are reading.

(The author requested anonymity)

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Frequently asked questions

Dr Sanjeev Jain, clinician and retired dean, Nimhans, Bengaluru, talks about schizophrenia

What is it? A mental illness that can impair how a person thinks, feels and behaves. It is classified depending on the symptoms (such as paranoia, little or no emotions, unusual perceptions, movements and sensations, poor memory and focus). It can also overlap with personality disorders, and developmental disorders (such as autism).

What is the cause? Pinpointing a specific cause is difficult, and most often it happens without an obvious explanation. Like blood pressure or diabetes, it can ‘run’ in the family (no precise genetic mechanisms have been discovered though). Environmental stressors, lifestyle (such as substance abuse), viral fevers and previous infections may also cause the illness to manifest.

Who does it affect? It is estimated that one per cent of the population will develop schizophrenia in their lifetime. Symptoms generally emerge in people between 15 and 30. Women and men are equally at risk, but female patients additionally face gender-related discrimination at every level.

Is it curable? The treatment is prolonged, over several months and may even be lifelong. There may be occasional (in some cases frequent) relapses. It can be managed like hypertension or diabetes, but symptoms tend to fluctuate, and medicines need constant adjustments.

About 20% recover completely, but for 15%, the illness becomes chronic. About a quarter require hospitalisation, often for just a few days or weeks, for adequate treatment. Patients with a higher level of education and more social skills recover better, as by virtue of having acquired new abilities, the brain develops a greater ‘reserve capacity’ to repair itself.

People often refuse treatment because of the fear of side effects, such as tremors, weight gain and erratic menstrual cycles. Social and community welfare services are essential for optimum recovery, but are often inadequate.

Did you know? The first modern medicine to treat ‘insanity’ was invented in Calcutta (now Kolkata) in 1931. All drugs are based on, or derived from the insights from the actions of reserpine, an active ingredient found in sarpagandha, a medicinal plant found commonly in India. Modern antipsychotics were invented in the 1950s, but a better understanding of the actions of reserpine, and modern chemistry, allowed new compounds to be created. This has improved our capacity to treat schizophrenia.

Cost of treatment: Tablets can cost from Rs 5/day to Rs 150/day. Free drugs are available for the poor under the public health system. A recent ordinance by the Insurance Regulatory and Development Authority of India has asked insurance companies to make provisions to cover mental health illnesses.

Factors that hinder diagnosis: In India, the biggest myth is that schizophrenia is black magic, a demonic possession, or divine retribution. Others believe schizophrenia is a chronic condition, which makes them pessimistic and lose interest in the treatment early on.

Unlike in the West, people in India don’t discuss illnesses openly, so public understanding of the condition is limited.

Some support groups: Action for Mental Illness India (ACMI), Chittadhama, Richmond Fellowship Society, and Medico Pastoral Association are based in Bengaluru.

Chennai has The Banyan, and Schizophrenia Research Foundation (SCARF). Sanjivini Society for Mental Health is in Delhi. Shraddha Rehabilitation Foundation is in Karjat, two hours from Mumbai. Ishwar Sankalp, and Anjali are based in Kolkata. Ashadeep is in Guwahati. Colleges and hospitals like NIMHANS also run patient support networks.

Books to read: ‘Surviving Schizophrenia’ by E Fuller Torrey, and ‘Sepia Leaves’ by Amandeep Sandhu in English. ‘Sharapanjara’ in Kannada by Thriveni.

Can patients lead a normal life? Participation in 100% of social life can aid quicker recovery. Everyone has a right to a normal life, a job, a family.