“I Hope it is not Schizophrenia?!”
This is a question that I get asked frequently by family members after the first assessment. It is as if Schizophrenia (SZ) were the biggest threat to the health of the patient. Many people tell me that they have read on the internet about Schizophrenia (SZ) and that it is untreatable. Others mention that they have seen a neighbour or an acquaintance who has schizophrenia and the devastating effect on the family is distressing. Regrettably, many Psychiatrists too reinforce Schizophrenia as a BIG mental disorder and make families and care givers lose hope of any improvement.
Fortunately, scientists and researchers in mental health science have made significant advances in our understanding of disorders of the mind. Back in 1994, the mental health professionals were given a very clear guideline about when to diagnose somebody as suffering from Schizophrenia and when not to. The narrowing down of symptoms and signs required for SZ were aimed at enabling clinicians to look outside the conventional labeling of Psychosis and to enable identification of other psychiatric disorders which were more amenable to treatment and did not have the disappointing outcome that SZ had led to over the previous decades.
Regrettably, 21 years after that change, I still see people labelled as schizophrenia, who do not have the illness and who can be helped. When I announce this to the family after my assessment, some look at me with unease, some with surprise and others with awe.
“My opinion is that your daughter does NOT suffer from SZ. I assume you have come to me for my opinion and if you can trust me then we can start helping your daughter get back her life”, I said. The mother of a 28 yr old girl, who apparently had ‘SZ’ since the age of 17 was not very sure and expressed her uncomfortableness at my idea. Her concerns ranged from, fear of violence (‘she becomes violent if I stop her medicines’), to public embarrassment (‘she used to behave abnormally in public and hence we haven’t gone out in the last 4 years’) to concerns about sleep (‘if she will not sleep at night neither can I’). Nonetheless, my conviction and their belief in my skills have resulted in a smiling 32 year old on a trip to Kerala with the entire family in 2015.
“I cannot see how you can keep your wife’s ‘brain locked’ with these medicines AND expect her to do the entire household work too. Would you not want her to be a ‘free’ person with the intellectual capability to choose when to work and when to sleep?!” This was my attempt to make a husband look at the possibility of a better outcome to his 36 yr old wife’s ‘Schizophrenia’. His concerns were about anger, argumentativeness and suspiciousness. He also wanted his wife to not experience the lethargy, dullness and weight gain that was apparently making it very difficult at home. He remarked, “she has been unwell ever since she was born, how can you get her better”! His opinion about ‘SZ’ had been formed and reinforced by various Psychiatrists over the last 10 years, who had never questioned the diagnosis, and never thought of looking outside the box for treatment. Within a few months, she had been ‘freed’ from her chemical straitjacket and was contributing to her household work.
Not everyone is able to accept this though. A middle aged couple came a couple of years ago to discuss their adolescent son who had ‘SZ’ (?) diagnosed by a doctor at a reputed mental health service provider in East Delhi. Once, I had done my assessment, I announced that the young boy had a mental disorder which was treatable. “It is NOT Schizophrenia!” I said. But they were not convinced. They came back 6 months later to tell me that their son had improved on the same medicines for SZ as had been prescribed, but was no longer willing to continue taking them now that he was well. I informed them, “if it is SZ, then medicines will continue, if it is not SZ then he needs a different set of medicines”. Unfortunately, the illness continued to ravage the young man’s life and despite treatment for ‘SZ’ he committed suicide 2 years later. The hopelessness, which accompanies a diagnosis of SZ is often a strong contributor to death by suicide.
It is a long process to wean a person away from those strong neuroleptics/tranquilizers which have been traditionally used for treating SZ and fluctuations in health are very common. Sustained belief and trust in the treating Psychiatrist is essential for a family to successfully take the journey away from SZ. This is compounded by self-medication and reversing any treatment decisions that have been taken by the new Psychiatrist. Since, previous Psychiatrists have usually advised that SZ is untreatable and that ‘these medicines (antipsychotics)’ should not be stopped, families frequently fail to adhere to my prescription. This leads to relapse into the same dull, lethargic and apathetic mode which is harmful to the patient but apparently comforting to the care givers as they are fearful of ‘violence’. A young 20 yr old boy who had successfully transitioned to my philosophy of different medication, and had joined a video editing course, was suddenly taken back to the same situation when his elder sister decided that he was behaving abnormally again and hence needed Risperidone which had apparently kept him ‘well’ for so many years. She stopped my medicine because she had seen the boy sitting in his room with a newspaper talking to imaginary people. A budding career cut short not due to SZ, but because of the stubborn unreasonable belief in Schizophrenia. The sister was unable to explain why her brother had made such an exceptional improvement on my treatment without Risperidone but told me that another Psychiatrist had “scolded her for stopping Risperidone and taking a different treatment. It is SZ the Dr has confirmed”, she said, no longer trusting me.
The best difference I have made is when a person who has been taking Clozapine for many years, sleeping long hours, gaining weight and wetting the pillow every night; is weaned away from it and better diagnosis and treatment ‘brings back the smile’ of the patient. A GP referred a patient to me a few years back, who had been on Clozapine 300 mg per day for 3 years. Her husband was almost pulling his hair out when he met me. “What sort of illness is this, where the patient sleeps all day and night, eating, drinking and sleeping? She doesn’t look after the children and I have already sent my elder daughter to boarding school, and my elder mother is caring for the younger one”. I reassured him, “treatment is possible, but you have to be patient, and not expect speedy improvement. In 6 months, she will start feeling active and will care for your younger one, trust me,” I said. Despite some disbelief, they persisted with my treatment and today 3 years later, Clozpaine has been stopped, the lady is actively caring for her family, the elder daughter is back from boarding into a nearby school and the only niggling problem is the weight. The 78 kg weight that the 5” tall lady had been has only come down to 75 kg, it hasn’t gone down despite diet control (which has not been very aggressive either). I keep advising exercise, skipping or treadmill, but the lady is too embarrassed or too hesitant to do it.
The paradigm shift that I propose is to not focus on merely the voices but to focus on the overall quality of life. I help people to live with the voices, to understand that they are not real and to be able to dismiss them with a mere shrug. A 46 year old lady who used to ‘hear’ Dawood and Aditya Pancholi fighting over her (!), today says, “they are still there but I know they are not real. They don’t make me afraid anymore and I carry out my life as I want to not as they tell me to.” Earlier she used to be threatening her husband about his infidelity ‘which had been investigated and confirmed by both Dawood and Aditya’. She wouldn’t allow her adult daughter to go to college because people against Dawood would ‘get her’. She dismisses those actions now, saying with some embarrassment and some bravado, “I know nothing bad is happening”. Her son cried with happiness recently when he saw his mother singing and dancing at a family wedding function, “I have never seen my mother enjoying so much!”
Life changes with a mental disorder and more so when the name is so notorious as Schizophrenia. But, when treatment ‘brings back the smile’, families are ever grateful and appreciative. Some families who have spent lakhs on hospitalization, injections and medicines; realize a bit too late how important it is to get to the right Psychiatrist early on. In one case, where a 30 year old unmarried lady was brought to me with ‘Schizophrenia’, they had sold their farm land, the elder son had left college and was working in a job while the elder married sister’s in laws had forbidden travel to the family for the last few years. The father had died apparently unable to bear the suffering. The toll on finances, studies and relationships speaks immensely about the devastating nature of ‘SZ’. It doesn’t merely make the individual suffer, but the entire family bears the burden of ‘Schizophrenia’. This lady had the firm conviction that her ‘father was alive and a politician, her mother had been killed and the grand mother replaced, and her younger brother was married and had kids elsewhere’. She did not leave her house as the ‘neighbours would tell (her) not to go’ and would not speak to anyone on the phone as others would listen.
Mind disorders are a challenge. But we are gradually becoming better at identifying them, and treating them. Belief and hope is the essential requirement, but unfortunately these are the first mortality when one is told – you have SZ. My advice: challenge SZ and defeat it.