Learning to live with schizophreniaApart from medical care, people with schizophrenia require empathy, understanding and acceptance, but for many, that is still a far off reality.
There are days when twenty-three-year-old Bobbin (name changed) imagines himself as a cricketer. Sometimes he believes that he is too loyal for his own good and that leads him to think that his loyalty is the root cause of many of his life’s problems. There are also days when he feels the world around him is too loud for him to bear.
Bobbin has gone through several ups and downs in his life—he sometimes gets overwhelmed by his dark thoughts. And occasionally, he gets hit hard by his psychotic episodes. There was one time when he called his sister to tell her that he has been having this constant thought of hurting himself.
There are days when Bobbin has to learn to differentiate his thoughts from reality.
“My son is different from most children of his age. He has schizophrenia,” says Radha (name changed), Bobbin’s mother. “He has some strong beliefs that are hard to break through and delusions that can easily harm him, sometimes even us. But ever since his diagnosis, he has become better. But as a mother I am still scared to think of a world he will be in without us. The world around us only knows to look at people like him with pity. They don’t know how to help or enable him. They don’t know how to walk in his shoes.”
Radha was also the first in her family to accept and understand her son’s condition. She is dauntless and strong-willed. She understands that the stigma that surrounds her son’s mental illness is overwhelming. But she hasn’t given in.
Conversations around mental health, over the years, have slowly grasped momentum, and especially the Covid-19 pandemic has brought to everyone’s notice the importance of mental health. However, when it comes to a severe mental illness like schizophrenia, there is very little awareness.
“Compared to depression and anxiety, many do not know what schizophrenia is,” says Bharat Gautam, a clinical psychologist with Transcultural Psychosocial Organization Nepal. “It may be because depression and anxiety are more common than schizophrenia, which affects only about one percent of the population. However, schizophrenia is a severe mental condition that is accompanied by various other mental disorders like depression, anxiety, and even obsessive-compulsive disorder.”
According to WHO, schizophrenia is a chronic and severe mental disorder affecting 20 million people worldwide. In Patan’s Mental Hospital, one of Nepal’s leading hospitals for mental illnesses, cases of schizophrenia, over the years, have become more common.
“It is a disorder that needs both medication and counselling. And it affects different people in different ways. But schizophrenia mostly affects how people think, feel and behave. People with schizophrenia often have delusions and confuse their reality,” says Bhupendra Gurung, a clinical psychologist with Kanti Children's Hospital. Gurung previously worked at Patan Mental Hospital where he oversaw Bobbin’s case and provided him with counselling.
And during his tenure with the institution, Gurung says that he had people from all over the country coming for treatment of schizophrenia.
“Many patients only seek medical help at the later stage of the illness. That’s because not many people notice the early warning signs of schizophrenia, which includes irritation, sudden outburst of emotions or violent behaviours, eccentric conversations, lack of motivation, etc. And by the time we come to know of it, the patients are in a more vulnerable state,” says Gurung.
Gautam believes that this happens because of a lack of awareness.
“Many times, people are not aware of mental health issues and tackle them with traditional beliefs. And sometimes in doing so, they delay seeking medical intervention,” says Gautam. “Seeking help from a psychologist is often the last thing on people’s minds.”
The onset of Schizophrenia usually begins with psychosis, where one is unable to differentiate thoughts from reality. Their behaviour is characterised by disorganised thinking. And it affects their cognition—which is also the reason it affects their learning and retention of verbal information, explains Gurung. The mental illness can also be disabling if not treated on time.
“But with help, people who have schizophrenia can live with their condition and lead normal lives,” added Gurung.
It was when Bobbin was studying in grade eight that his mother first started noticing a distinct behavioural change in him. She remembers that up until then he was a studious student and got good grades.
“My son loved studying but all of a sudden he was not doing well with his grades. Gradually, he showed a lack of motivation and was struggling to do things on his own,” shares Radha.
Bobbin began gaining weight and he seemed dull, remembers his elder sister Babita, (name changed). Doctors initially diagnosed him with depression and he was given medication accordingly.
It was only about five years ago in Siliguri, India, that the family finally came to know that Bobbin had schizophrenia. Radha remembers bursting into tears and thinking why her son? They couldn’t believe what they had heard. And when she learned about symptoms of schizophrenia, it all began making sense to her.
“Up until that point in time, we had visited almost each and every mental hospital in the country. We never imagined that something like this could happen to our son. For many years, I thought he was being stubborn, pulling mischiefs and being unreasonable but it turns out he was showing us signs of his condition and we didn’t realise it,” says Bobbin’s father.
Bobbin, however, has been doing much better than before with medication and counselling, for which the family is very grateful. He has improved a lot, says his mother and sister, and they believe the positive changes are due to the hours of counselling Bobbin has received and believes in.
“At first it was just medication, and we had not tried counselling but it seems counselling is as important as taking medication for his condition,” says Babita, who is also a psychology student herself. “It was after he had confessed that he was having suicidal thoughts that I decided to take him to Kathmandu with me to try counselling. And it has really worked for him.”
When a person with schizophrenia is able to confide in a therapist, they are able to understand their illness better and work on themselves.
“When we diagnose someone with schizophrenia, we try to find out about what issues aggravate their conditions—be it their environment, family, socialisation, behaviour? We try to analyse what triggers them. Then we gradually work on their behaviour by communication and guidance. Getting better involves a process and it requires observation and takes time,” says Gurung.
Bobbin too is aware of his condition and follows a routine to keep himself in check. With the time that he has taken to understand himself, he has slowly opened his bounds of social life. He has been taking slow strides to do what he loves the most, study.
“Bobbin always says he wants to study, even though he knows he will have difficulty doing things. He repeated grade 11 for three years, but he didn’t give up. He passed the exam and now he is moving forward slowly with his life,” says Radha.
According to Gurung, one of the things people fail to realise when it comes to disabling mental disorders is that pity has nothing to do with understanding their condition.
“Rather than understanding them, they sympathise distantly, which is not helpful at all. What individuals living with such mental conditions need is assurance that they have a chance at leading normal lives. They need support in enabling scenarios where the world is accepting of their condition,” says Gurung.
From not being able to understand what Bobbin was going through to accepting and working towards helping him get better, the family has come a long way. The family says that the goal is to be there whenever he needs them. They now just want Bobbin to live a happy life. The family has become active in advocating for more awareness of many mental illnesses.
“In these years of knowing and learning about schizophrenia, our family has become closer to each other. There was a time when things were really rough but now that we have accepted and moved on, things have been a little easier,” says Babita. “Knowing a condition is not enough to work on it. And for people with mental issues, what they need the most is the support of loved ones. And I am grateful that my brother has a family that walks shoulder to shoulder with him.”
Some names have been changed to protect identities.