'We must accept schizophrenia as a chronic illness'

The Indian government has pushed mental health in a big way in 2025 Earlier this year the Economic Survey 202425 highlighted that mental wellbeing encompasses all our mentalemotional social cognitive and physical capabilities In 2024 the government also finally brought mental health services under a national health insurance policy namely the Ayushman Health ServicesOne of the biggest mental health crises is schizophrenia and recently the disease has come into the limelight after a former Bollywood actor made a public statement claiming he was wrongly diagnosed as schizophrenic His declaration has once again brought the focus on how the stigma lack of awareness and the burden of care all come together to form a web that is almost impossible to untangle mdash both for the patient and their family membersAmrit Bakhshy with daughter RichaAmrit Bakhshy 82 has become the face of many such families as he has been taking care of his daughter Richa 53 who suffers from paranoid schizophrenia for the last 34 yearsBakhshy the former president of the Schizophrenia Awareness Association SAA and now a trustee was called upon by the government in 2010 to help in drafting a newer draft for the Mental Health Act of 1987 When the committee which included Bakhshy suggested a lot of changes it was decided that a new Act was needed One major push was to prohibit the use of Electroconvulsive Therapy ECT on minors and on adults only under general anaesthesia and administered only by a psychiatrist in a licensed institute or hospitalKonkona Sen Sharma centre who played a person with schizophrenia in the film 15 Park Avenue with director Aparna Sen right and Shabana AzmiRicharsquos story began at the age of 18 in 1991 when Bakhshy received a call at his Cuffe Parade office from the boarding school in Dehradun where his 18yearold daughter Richa was studying asking him to rush there as she had had some sort of nervous breakdown ldquoI hopped on a flight to Delhi went to Dehradun by road through the night and finally reached the school where they had kept her in the infirmaryrdquo Bakhshy tells us over the phone from Dhayari PuneThat was Richarsquos first episode of paranoid schizophrenia triggered when her uncle mdash her local guardian mdash died at home ldquoWe think seeing his body unresponsive with his jaw slack triggered the episoderdquo says Bakhshy who will turn 83 next month ldquoThe doctor at the infirmary though was extremely accurate in his diagnosis of what had taken place and told us then itself that she most probably had paranoid schizophrenia Medication was started for it almost immediatelyrdquo adds BakhshyRussell Crowe in A Beautiful Mind based on the life of Nobel Prizewinning economist and mathematician John Nash PicsGetty ImagesAfter consulting a psychiatrist in Mumbai who Bakhshy felt gave the ldquovery very wrongrdquo advice that it was just a oneoff episode Richa mdash who loved painting and drawing mdash was taken off her medication She went back and gave her Standard 12 examination and believing everything was fine and that she shouldnrsquot miss an academic year Bakhshy and his wife secured admission for her in Baroda University to pursue her love for the creative arts However she soon got into bad company and began to blow through her monthly allowance while being off her medicationBakhshy however was a parent who was invested in his daughterrsquos treatment ldquoI found an article in Time magazine that talked about the medication for schizophrenia it cost me Rs 7000 at the time for one strip and we paid duty on it toordquo he saysThe average Indian was introduced to schizophrenia in 2005 after the death of veteran actress Parveen Babi who was suffering from itBakhshyrsquos wife whom he subsequently lost to cancer in 2020 had quit her hospitality job in London to take care of their daughter fulltime back in 1991 itself and began to visit temples and healers in search of hope ldquoShe wasnrsquot religious but it was a very tough time for us At the same time the medication was causing severe side effects Richa slept a lot and drooled and it was very difficult for us to see her like that Then a homoeopathic doctor told my wife that she needs to be taken off her meds and lsquodetoxedrsquo in order to begin his medication mdash and that was a big mistake because you cannot just take someone off such medications they have to be tapered off Also much like being on medication for diabetes you can never go off itrdquo he addsWhat followed which Bakhshy describes as ldquovery bad daysrdquo finally prompted the family to go to a doctor in Pune who had warned them never to stop the medication Bakhshy feared backlash but the doctor did treat Richa and then came the conversation about dosageBakhshy contacted the National Institute of Mental Health and Neurosciences NIMHANS in Bengaluru where doctors suggested that Richarsquos dosage could be gradually upped from 250 mg to 800 mg ldquoWe went to 500 mg but when we took it to 700 mg she had seizures we then brought it back to 500 mg which we realised through trial and error was right for herrdquo he says This went on until 2007 Bakhshy felt that he was financially secure to retire and dedicate himself to taking care of his daughter fulltime but Mumbai was too chaotic for her and the family moved to Pune where they still liveWe ask Bakhshy if he felt that the 34 years he has dedicated to his daughterrsquos care came at the cost of his personal identity ldquoI have no regretsrdquo he replies quickly In another life he confesses he would have become a writer Today he says he is happy to be an empathetic ear to many primary caregivers to those with schizophrenia ldquoI donrsquot go for long holidays I donrsquot remember the last time I went for a movie or a play but it gives me a lot of satisfaction that I can reduce someonersquos suffering to some extent by talking to them by giving them some advice Because there are no listeners for their suffering I listen to the story that I have heard many times and I donrsquot keep the conversation short even if I am in the middle of something This is my life and I am very satisfiedrdquoHigh Numbers7237The treatment gap that is between diagnosis and actual treatment in the country83337Treatment gap in nonmetro areas which is higher than the national average35Average no of months that pass between onset and consultation29Average no of months that pass between diagnosis and treatmentPiciStockWhat is insight in schizophreniaInsight in schizophrenia refers to a personrsquos awareness and understanding of their illness including recognising symptoms as abnormal and needing treatment Poor insight a common feature of schizophrenia can lead to nonadherence to treatment negative outcomes and challenges in daily functioningNational Mental Health Survey NMHSPiciStockPsychiatric service dogsAlthough in the very initial stage dogs are being trained especially to help those who have hallucinationsThe dogs help the pet parent identify visual hallucinations if they say some command words like ldquogreetrdquo and the dog doesnrsquot respond it is an indication that what the patient is seeing isnrsquot thereThey also prevent patients from selfharm during auditory hallucinations with some tools like jumping on their lap and laying their head against the pet parentrsquos preventing the person from hitting their face and bringing them back to the present momentlsquoECT is most effective but demonisedrsquoDr Prabhak D Jain Associate Professor amp Head of Department Psychiatry ndash Terna Medical CollegeDr Jain says there is awareness now about schizophrenia being treatable ldquoAlso you can treat almost 70 per cent of the illness it is a chronic illness though mdash you might be in remission but you will always have it for liferdquo he says There is also the increased acceptability to medical management of the disease coupled with the fact that most patients are forthcoming about what they are experiencing and not being secretive ldquoThey volunteer information like lsquoI am hearing voicesrsquordquo he addsDr Prabhakar JainDr Jain also talks about how ECT under the government and the Mental Health Care Act has vastly improved as it is given under general anaesthesia ldquoWe never took a positive view of the treatment but it has far fewer side effects than most others and has proved a fast recovery among patients The old way where patients were tied and given shock sans anaesthesia is banned in Indiardquo he says This however is very difficult to explain to family members who fear ECT ldquoMainly the movies portray it very differently from how it is done even today solidifying the lsquodimaag mein current lagaayengersquo narrativerdquo he addsWhile Dr Jain admits that families understand the longterm need for treatment he too feels that most do not understand that schizophrenia is lifelonglsquoMy child is not madrsquoAarti Pandit MPhil in Medical and Psychiatric Social Work Schizophrenia Awareness Association PuneStigma continues to be one of the big challenges for caregivers The Schizophrenia Awareness Association SAA is a place where family members can enrol those suffering from the illness to help equip them to be a part of societyAarti Pandit psychiatric social workerSAA incharge Aarti Pandit says ldquoWe accept physical illness very quickly but not mental health issues We rush to the doctor for a fever but if we feel depressed anxious or have delusions and hallucinations we wonrsquot go to a psychiatrist When we tell caregivers to take their ward or child to a psychiatrist or therapist we often face pushback like lsquoMy child is not madrsquordquoIn schizophrenia she adds a patient might not always have ldquoinsightrdquo or be aware that they have a mental health issue ldquoThis often comes and goes In our counselling sessions people might be in denial when asked what has happened mdash they may say lsquoIrsquom perfectly fine Itrsquos my family that has problems I donrsquot need psychiatric helprdquoUnmonitored or untreated schizophrenia can result in fatal mishaps caused by delusions selfharm or even harm to closest family members The SAA team which includes Pandit and also a psychiatrist builds rapport with the patient and asks them mdash if all is well why arenrsquot they able to keep a job ldquoItrsquos at this point we often notice a pause and then they say things like lsquoTherersquos just a small problem but I can manage and get a job now I donrsquot need medicationrsquo So insight is key when they come to our centre With proper psychoeducation it becomes easier once patients understand lsquoYes I have some mental health issuesrsquordquo says Pandit Enquiring about trauma is one of the big things when they begin to work with a patient ldquoDuring admission we also look at any history of sexual assault or posttraumatic disorders that might trigger schizophrenia We often observe persons with mental illness PMIs having comorbidities like obsessivecompulsive disorder OCD mood disorders or anxiety spectrum disordersrdquo she addsPandit shares the case of a patient who exhibited grandiose ideation ldquoHe believed that if he threw money all the traffic would clear for him He is currently in remission has found a job and has dropped out of the rehab centre without a proper relapse prevention plan mdash which raises serious concerns about his longterm recoveryrdquo she saysThe ethical conundrum faced by doctors is realDr Milan H Balakrishnan Head of the Department of Psychiatry and Psychology at Masina HospitalsHas the treatment or the disease itself changed from when he began practising 14 years ago ldquoOnly context has changed with times otherwise the disease has remained the same but treatments have improved significantlyrdquo says Dr Balakrishnan ldquoThe brain in schizophrenia has neurochemical changes at a molecular level and is trying to protect itself from threat all around it and threat has gone from lsquopeople are following me and that radio is playing news about mersquo to saying that lsquoAI is talking about me or people have cameras that are tracking me and they are trying to harm me through thatrsquo Otherwise the core of illness remains the samerdquo he addsDr Milan H BalakrishnanThe ethical conundrum is another coin for psychiatrists ldquoFamilies in India are more involved in treatment and they have more ability to make decisions on behalf of the patient when he or she is very unwell but when the family is not available or not there at all the legalities of treating the person are morecomplicatedrdquo he saysldquoSometimes we canrsquot do much because legal barriers will prevent us from treating someone where no family member is involved There isnrsquot a good way to manage a situation because the law says that if the person has the capacity to understand that he has an illness but doesnrsquot want to take treatment then the choice is with the patient Until the person is a risk to himself and others that can manifest in terms of no selfcare as in the patient is not eating or harming someone only then can we do something If I know a person is unwell and is going to be a risk the law says I canrsquot do anything until he actually harms someone mdash for example if it looks like someone may harm their wife in a few months because of paranoia and suspicion For a doctor the most vulnerable person here is still the patient But do we not think about the wiferdquo he asksTreatment challenges also include the fact that many patients do not take oral medications in which case repository injections with dopamine and serotonin inhibitors come in ldquoThese injections can be given every month and the these are releasing adequate doses every day mdash so that medication is continuous Most of these patients need regular medications in this illnessrdquo he says ldquoYou might be in remission but you may need to be on some form of medicationrdquo