New Delhi: "I'm a little pissed off at how much airtime depression and anxiety get in the public sphere, especially among the elite. But the moment you say you have delusions or hallucinations, people get scared. You become an object to be managed, somehow," academic Ananya Biswas* told IndiaSpend in January 2021.
Biswas, 38, is among 3.5 million Indians who live with schizophrenia, according to the Global Burden of Disease Study (GBD), 2019. Nearly 200 million Indians had mental health disorders, according to GBD 2019. Of these, 1.75% live with schizophrenia and around 45% had depressive or anxiety disorders, reflecting the over-representation of these in conversations about mental health that Biswas referred to. Yet, 50% of long-stay users in public mental health hospitals in India live with schizophrenia, according to a health ministry-supported report from 2019. Schizophrenia is classified as one of the most severe mental disorders, with disruptive symptoms (psychosis) associated with considerable disability.
In 2021, as a working woman living with schizophrenia, Biswas is an aberration in many ways. For people with schizophrenia, the ability to pursue employment and be financially stable provides a measure of autonomy that is vital for self-esteem, recovery from symptoms and living independently in the community, multiple studies have noted. This is echoed by dozens of persons living with mental illness and their families, mental health professionals, disability rights activists, disabled peoples' organisations and psychiatrists at government hospitals we interviewed in the past year. But schizophrenia disproportionately affects people in early adulthood (22-34 years) and early- (35-44) to late-middle age (45-64), covering the entire working age spectrum, according to GBD 2019.
For Indian women living with schizophrenia and psychosis, stigma further impacts their work, marriage and family life. Decades of popular culture and films depicting stereotypes of persons with schizophrenia or psychosis as violent, dangerous villains and serial killers propagate a "figure of fear and mystery", Biswas points out, thereby adding to this stigma. An increased risk of suicide for Indian women with schizophrenia required urgent attention, GBD 2019 found, when Indian women already have double the global suicide death rates. The stigma forces many like her to conceal their mental health needs from employers and institutions, even as speaking publicly about depression and anxiety becomes increasingly commonplace especially during COVID-19, even encouraged, she said. Biswas has never publicly disclosed her diagnosis.
Decades of popular culture depicting persons with schizophrenia or psychosis as violent and dangerous
propagate a "figure of fear" that add to the stigma, says academic Ananya Biswas. Illustration - Gulal Salil
For women living with schizophrenia to pursue meaningful employment and live independently, locally available and accessible community care for symptom management (as opposed to institutionalisation), and supported employment initiatives are required, say disability rights activists, mental health professionals and persons living with mental illness. GBD 2019 recommended using community-based programmes and non-psychiatric, community health workers to reduce the treatment gap for mental illness in India, based on existing models such as the Atmiyata programme in rural Maharashtra. Health activists on the ground supported this approach. Yet India continues to place emphasis on institutionalised care, we found.
A year after the COVID-19 lockdown was imposed, much has been made of the 'new normal' and 'WFH' (work from home) and the potential to transform workplaces. But what does 'new normal' mean for people whom the old 'normal' excluded, said Soumitra Pathare of the Centre for Mental Health, Law and Policy in Pune. Even prior to the COVID-19 pandemic, only 23.8% of persons with disabilities were part of the labour force, a survey by the National Statistical Office (NSO) found in 2018. The lockdown drove many persons living with disabilities out of the work-force. Women's participation in the workforce in particular dropped precipitously.
To understand how the pandemic has further complicated the struggle of pursuing meaningful work while managing a highly stigmatised mental health condition, IndiaSpend traced the journeys of five women living with schizophrenia and psychosis, in this concluding article of our Mental Health Fellowship series in partnership with The Health Collective. Read our first two articles in the mental health series here and here.
Their journeys revealed a pattern of lack of awareness leading to late diagnosis and care for symptoms, concealment of mental illness from employers and acquaintances due to stigma, repeatedly being forced to quit positions during periods of ill-health, and stressful work environments often triggering a collapse. "Seeking work or resuming previously held jobs, attending work regularly, or/and performing work with competence and efficiency" was the most desired outcome after "symptom control" reported by persons with schizophrenia and their primary caregivers in India in a 2012 study. Supported employment initiatives by nonprofits and public health institutions, which include counselling of employers to create favourable workplace conditions for persons living with severe mental illness, are showing India the way forward.
Gainful work is a key factor in self-esteem and unemployment is a key variable in poor course outcomes (such as relapse or heightened symptoms, death, death by suicide, abandonment, divorce), the landmark Madras Longitudinal Study, which followed 45 men and 45 women in urban India living with schizophrenia over 25 years, revealed in 2012. But finding a job is only the beginning of the struggle to live a working life, interviewees told us.
Research from India and other countries reveals high levels of stigma towards persons living with
schizophrenia at work, in healthcare settings, and social relations. Illustration: Gulal Salil
Like in other parts of the world, research from India reveals high levels of stigma towards persons living with schizophrenia. The stresses of working while managing mental health conditions like psychosis or schizophrenia are laid bare by Biswas. "I overdo things in my productive time so I can explain away the fact that I've had serious episodes of psychosis when I couldn't work--chunks of time in my CV that appear 'mysterious' when I was unemployed, or employed but just doing the basics because I couldn't afford to stress myself mentally," says Biswas. "It's like I'm carrying a secret--a truth that is obvious to people who know me and my history, but too deadly to be spoken. That's the reality."
Over 50% of 280 participants living with schizophrenia across Tamil Nadu, Goa and Maharashtra reported that they did not take up work opportunities, whether in personal relationships, education or work, in the past year due to anticipated negative reactions from others, according to a 2014 study on discrimination against Indians living with schizophrenia by the nonproft Schizophrenia Research Foundation (SCARF) in Chennai, National Institute of Mental Health And Neuro-Sciences (NIMHANS) in Bengaluru and Centre for Global Mental Health, UK, among others. Fears included worrying others would look down on them, think they were inferior, avoid them and consider them unviable for marriage or work. Nearly half (46%) reported being uncomfortable disclosing their illness. All this manifested in feelings of internalised shame, stigma and low self-esteem.
"If [employers] can avoid recruiting a person with mental illness, most will," said Thara Rangaswamy, co-founder of SCARF and the principal researcher behind the Madras Longitudinal Study. "Persons with disabilities like visual impairment or locomotor disability are often more activist--they will fight for their rights. But people living with schizophrenia often don't do it at all, either because their functioning is impaired by symptomatology, or the cost of disclosure is so high because this is one disability where stigma clouds everything."
Conditions in contemporary workplaces in India such as long working hours, expectations of constant output and implicit sexism further aggravate the ability to cope with schizophrenia, say interviewees. It is even worse for those who are unaware that they could have schizophrenia. The implications of a lack of diagnosis have played out extensively in artist Pia Bhardwaj's* life.
Pia Bhardwaj was undiagnosed and dealing with symptoms such as thought-broadcasting in a hostile workplace atmosphere. "All this while I was not being treated, no medication, psychotherapy, anything. So I was a very sick person going to work as usual," she says. Illustration: Gulal Salil
Bhardwaj, 33 and a successful freelance graphic design artist, experienced a first episode of psychosis as a student at the Parsons School of Design in New York in 2015. She was 27, in keeping with the relatively later onset of schizophrenia and psychosis in women, compared to men. Far from her family in Udaipur, dealing with work and other stresses, she found herself becoming paranoid, speaking in gibberish, losing control of her body and losing touch between reality and delusions. This continued into joining a design firm in Mumbai, where she struggled with thought-broadcasting, a symptom of psychosis which led her to believe her colleagues were tracking her thoughts and mocking her. She says, "All this while I was not being treated, no medication, psychotherapy, anything. So I was a very sick person going to work as usual."
"They had hired me thinking I was from this great institute, Parsons', and now one of the firm's owners could see I was struggling and didn't know a lot of things. She would always yell at me and that really affected me, added to my own insecurity of not being normal," Bhardwaj told IndiaSpend.
Bhardwaj eventually quit her job, as her parents had the financial resources to support her even though they still hadn't realised that she was seriously ill. By 2017, as her symptoms escalated, her sister finally sounded the alarm and Bhardwaj visited a psychiatrist for the first time. There, she was diagnosed with psychosis and put on heavy doses of Arpizol and Relicalm, which she continues to take.
By 2018, when a renowned architecture firm Bhardwaj had admired for years recruited her as a communications designer, she felt well enough to take the job. Again, she found that the high-stress environment aggravated her anxiety. She recalls sleeping in the office, her boss calling at 3 a.m. on a Saturday to yell at her. Finally, she quit, disappointing her parents.
Impact more acute for women
Amrita, a 35-year-old user experience (UX) designer at a company in Noida, resumed looking for work after she was symptom-free, having had to quit multiple workplaces in the past due to severe episodes of schizophrenia-related psychosis that made it impossible to work. Like Bhardwaj, Amrita too did not realise for a long time that she was experiencing psychosis, with her first onset in 2014 at age 28. Amrita went home to her parents in Kanpur where, unbeknownst to her, they started slipping medication into her meals, after a psychiatrist diagnosed her with schizophrenia.
"Well known psychiatrists my parents had consulted in different cities, without involving me, held prejudices stigmatising schizophrenic people. Some expected me to be violent, some irrational, and others felt that I would never agree I had schizophrenia because har pagal yahi kehta hai. So without even meeting me, they prescribed medication," she says. After four months of medication, she recovered. She returned to Delhi in 2015 where she worked at a company that worked on entrance test preparation. She remembers it as "a horrible place to work, even before I came out as a lesbian".
Men living with schizophrenia faced discrimination most acutely at the workplace, whereas women faced it in marriage, according to the 2014 study on stigma and discrimination. This was a finding in older studies on schizophrenia and gender too. However, it is important to place these findings in context of India's social dynamics. As Indian families have higher educational and employment aspirations for sons, gender roles direct different life trajectories for men and women, a 2012 study on gender perspectives of living with schizophrenia in India had noted. Hence, the findings of the 2014 study on discrimination do not reflect a lack of workplace stigma for women, but are influenced by the pre-existing lower numbers of women in the workforce.
More female respondents were unemployed than male, a comparative analysis of employment in persons with severe mental disorders in 2015 had noted. As the non-primary breadwinner, women may choose to quit their jobs at onset of severe illness, the analysis added.
While UX design is not itself a male-dominated industry, UX designers are usually the sole member of the company in that role in an often otherwise male-dominated workspace. While Amrita had female colleagues, the majority of them worked part-time or were married, and as a transgender woman, Amrita stood out even without disclosing her mental illness. "Even during the interview process, they were transphobic," she recalls. "The senior HR woman told me that the company is being progressive by hiring me." The stress of a toxic work environment triggered her second episode of psychosis and she quit after six months, returning to Kanpur and being put on medication secretly again.
This pattern of interrupted work, psychosis, suicidality and secret medication continued, escalating in a paranoia-triggered suicide attempt where Amrita lost both her legs, becoming a below-the-knee amputee. This is what finally led her parents to reveal her schizophrenia diagnosis for the first time. "It could have easily been avoided," Amrita says now. "They should have just told me."
While learning to adjust to her prostheses, she had to be entirely dependent on her parents and was forced to detransition after being on hormone replacement therapy for two years. Amrita's parents and the psychiatrist in Kanpur conflated her gender dysphoria--strong feelings of distress at her male-assigned gender identity not aligning to her authentic gender of female--with her schizophrenia diagnosis. But what actually caused her distress was being forced to present as male, she says. "My gender was taken away from me."
After freelancing for some time, she began working with a software development company as a UX designer again, presenting as male. Here the work environment is better in comparison to her last workplace, and the management has accommodated her physical disability by putting in railings--but she isn't sure she can "come out" as trans or having schizophrenia to her colleagues.
Just as she had moved into her own place with a friend in March 2020, the COVID-19 janta curfew was imposed and she had to move in with relatives in Ghaziabad, where she couldn't present overtly as female. Now, WFH has meant she is able to express her true gender. Currently, she is dreaming of starting afresh as Amrita at a new company. "I can be an out disabled trans woman to potential employers but I don't think I'll ever be able to talk about schizophrenia. Not even if they offered me the position," she tweeted in January, shortly after our conversation.
Abandonment, homelessness and institutionalisation
Abandonment by families and homelessness is the most visible of all social consequences of psychosis in women, with an estimated 20 to 40% of homeless women suffering from psychotic disorders. IndiaSpend previously reported on the case of one such woman, Lokkhi*in West Bengal, in January 2021. After being abandoned by her family and rescued from the streets by a nonprofit, Iswar Sankalpa in Kolkata, she now lives in their shelter for women and works at their bakery. She sends money back home to support her sons, although her family is not willing to have her live at home.
In India, the misconception that marriage cures mental illness is widely prevalent, often resulting in separation and divorce as being of 'unsound mind' is still grounds for divorce. An ethnographic study of 75 women with schizophrenia who were divorced or separated revealed in 2015 that 95% of marriages were arranged by families, and the women now lived in their parental homes with the onus on elderly caregivers. Among 200 patients associated with various clinics of NIMHANS, women were frequently coerced into situations of sexual abuse and to have abortions, separated from their children, abused by in-laws, divorced and abandoned, the 2012 study on gender perspectives of living with schizophrenia had found. Only one of five 33-40 year-old women IndiaSpend interviewed were married or in a long-term relationship.
Many abandoned women living with schizophrenia end up living indefinitely as long-stay users of a public mental hospital. Half of long-stay users (50.4%) in the 43 public mental health hospitals in India in 2019 were diagnosed with schizophrenia, followed by psychosis not otherwise specified, according to a Government of India-supported National Mental Health study by the Hans Foundation. Acute psychosis was the recorded diagnosis in 4.6% of long-stay users. More women (54.3%) than men were long-stay users.
A systematic review of 77 studies from 22 countries in 2019 revealed previous involuntary institutionalisation and diagnosis with a psychotic disorder as factors with the greatest risk of involuntary institutionalisation. Economic deprivation was also a risk factor.
Psychiatrists, superintendents and mental health professionals at 15 of the 43 state-run mental health hospitals and institutions reported difficulty coping with the homeless persons with mental illness being admitted to the hospitals during the COVID-19 lockdown, IndiaSpend reported in November 2020. As many homeless persons with mental illness emergency accessed psychiatry and acute care services at NIMHANS, Bengaluru during the first month of the nationwide COVID-19 lockdown, as in the entire preceding year, according to a NIMHANS report in August 2020. They had severe mental illness, including schizophrenia, with impaired comprehension, poor self-care and compromised nutrition impacting their immunity levels, increasing their risk of contracting COVID-19.
Studies and disability rights organisations have highlighted over years the need for publicly-funded community resources like halfway homes, day care and rehabilitation centres that might support women with chronic mental illness in securing employment and living within the community. But most expenditure set aside for mental health in India was concentrated in upgrading tertiary care in state mental hospitals, the government-supported National Mental Health study noted in 2019.
This emphasis on a few tertiary psychiatric hospitals instead of scaling up local community mental healthcare models persists. Less than 1% (Rs 597 crore) of the Union health ministry allocation in Budget 2021-2022 went to mental healthcare. Of this, just Rs 40 crore was allocated for the National Mental Health Programme, which powers community mental healthcare like the District Mental Health Program (DMHP), or in developing primary health centres. Instead, the majority has been allocated to two specialised tertiary hospitals--Rs 500 crore to NIMHANS, Bengaluru and Rs 57 crore to Lokpriya Gopinath Bordoloi Regional Institute of Mental Health, Tezpur.
What central funds have been allocated to the DMHP over the past five years have not been fully utilised by states and union territories (UTs) either (health is a state subject). The DMHP covers services such as detection, management and treatment of disorders, life-skills training and counselling in schools and colleges, counselling for suicide prevention, workplace stress management, capacity building including manpower training and development, awareness generation for early identification and timely management of mental disorders, and addressing stigma. For all these activities, the central government provides financial assistance to states and UTs up to Rs. 83.2 lakh per district, to 692 districts by 2020-21, out of the flexible pool for non-communicable diseases under the National Health Mission.
Among the 37 states and UTs, only five states--Andhra Pradesh, Chhattisgarh, Karnataka, Sikkim and West Bengal--have used more than 50% of allocated funds for the DMHP, in the six years to 2020-21, according to health ministry data submitted to Parliament in February 2021. Another five states and UTs--Dadra and Nagar Haveli and Daman and Diu, Gujarat, Meghalaya, Tamil Nadu and Uttar Pradesh--utilised more than 40% of their allocation. As many as 14 have not utilised more than a quarter of their allocated funds. The worst performer is Delhi, which has spent virtually none of its central allocation on its DMHP in the six years to 2020-21.
Supported employment programmes the way forward
Unemployment in persons living with schizophrenia can be a matter of life and death in a lower-income country like India where families were previously dependent on the income, R. Padmavati, director, SCARF told IndiaSpend. Being disabled in the domain of employment leads to increased financial stress on the family, as out-of-pocket expenditure on mental health remains high and the amount and disbursal of disability pension remains extremely low at an average of Rs 1,000 per month, we reported in January 2021. Programmes for vocational training and work-placement for persons living with schizophrenia by non-profits Iswar Sankalpa in Kolkata and Banyan Tree in Kerala and Chennai are showing the way forward.
In Kolkata, Pinky Ghosh*, 38, who also lives with schizophrenia, works at a West Bengal Khadi Board centre weaving cotton thread for Rs 50 per five bundles, where she was placed by the Sarbari unit of Iswar Sankalpa. She makes roughly Rs 1,200 a month. During the lockdown, as the centre stayed shut, she worried about how she would continue to pay for medication that kept auditory hallucinations in check.
She lives with her 70-year-old mother, and the household runs on her late father's pension of Rs 5,000 per month. In addition to helping her mother run the house, she finds her routine of going to the centre calming. "I'm only able to earn Rs 1,200 a month, but that Rs 1,200 means a lot to me," Ghosh told IndiaSpend in December 2020. "I like going there. What I really want," she said eagerly, "is to be able to stand on my own two feet strongly."
"I am only able to earn Rs 1,200 a month, but that Rs 1,200 means a lot to me.
What I really want is to be able to stand on my own two feet strongly," says Pinky Ghosh
who works at a state Khadi centre. Illustration: Gulal Salil
"In our country where the majority of people have to earn a monthly income to survive, employment is an important outcome of any intervention," said Padmavati. SCARF, a World Health Organization (WHO) collaborator for mental health research and training, is one of the only places in India that provides dedicated vocational training and work-placement for persons living with schizophrenia. The majority of SCARF's clientele comes from lower- and lower-middle-income backgrounds.
Clients are involved in various graded activities at SCARF's vocational training centre for a period of time. Here, they are mapped to an activity based on their own interest and then factors like regularity, attendance, punctuality, peer interaction, how frequently breaks are required etc are observed--"because once you are employed, all this will come up".
Often, the available placements involve minimal skill or education; for instance: data entry and reception work, sales executives, construction, in petrol pumps, as a telephone operator, or in an export garment factory, jute bag manufacturing, basket weaving or chocolate-making. Following placement, SCARF follows up with both employer and the client to check in regarding functioning, discrimination, etc. They have instituted the Maitrayee award to incentivise agencies who recruit from SCARF.
Employers also have many misconceptions related to disability and violence. "On paper, mental illness is a part of disability [per the Rights of Persons With Disabilities Act 2016] but at the ground level, whether it is reservations for government jobs or active implementation of policy, it is not getting translated into action," said Padmavati.
After years of reflecting on the issue of income generation, and the lack of government focus on supporting employment for people living with mental illness, SCARF has been encouraging such families to start small businesses together. Since 90% of SCARF clientele are people living at home, families are heavily involved in rehabilitation.
Earlier, not many women with mental health problems opted to work, but this has changed with younger generations, SCARF has seen. Frequently, women who are homemakers do not want to or may not be able to go outside for work, but want to do something productive at home, says Kiruthika Nandakumar, who handles vocational training and placements at SCARF. "So then we encourage them to do activities like basket-weaving or tailoring."
Since the pandemic, however, many women clients who work in manual labour or as domestic workers have lost their jobs and faced financial insecurity, further putting them at risk for relapse without access to medication.
A project at NIMHANS, Bengaluru shows the link between employment and reducing disability associated with schizophrenia
A Supported Employment Programme (SEP) developed by NIMHANS faculty for persons with severe mental illnesses showed good placement rates and improvement in socio-occupational functioning and reduced disability in 2020. The 63 participants--44 with schizophrenia and 19 with bipolar affective disorder--were recruited for the study from out-patient clinics at NIMHANS between February and December 2018.
Forty employers--government and private--were contacted and oriented about the strengths and limitations of persons living with mental illness and how employment can facilitate recovery. Reasonable accommodations facilitated included flexible working hours, slow/gradual exposure to work, having a single supervisor, flexibility in availing leaves, weekly off, day-time shifts, individual work assignment with specific instructions, less stress on deadlines, flexibility in task completion time, WFH options, minimal social interaction in job profile and minimal stress-causing workplace distraction.
A total of 32 participants--51%--were successfully placed in competitive jobs across Bengaluru in positions ranging from office assistant to hardware and networking officer, with salaries ranging from Rs 4,000 to Rs 1 lakh per month. Among the 32 placed, 21 (662%) were male and 11 (34%) were female participants. Among them, five (16%) males and four (13%) females continued to be employed as of 2020.
Another 2019 NIMHANS study on vocational rehabilitation in a rural cohort of 50 persons living with schizophrenia under the Community Intervention in Psychotic Disorders programme in Thirthahalli taluk in Shimoga district, central Karnataka recommended utilising local income generation programmes, such as the Mahatma Gandhi National Rural Employment Guarantee Scheme, women's self-help groups and primary agricultural and credit cooperative societies, for supported employment. Locally available income generation programmes--both governmental and non-governmental--can be utilised as livelihood opportunities for persons living with mental illness, with guidance from community-level workers for rehabilitation, the study demonstrated.
Accredited Social Health Activists (ASHA) and Village Rehabilitation Workers were identified as potential ground-level workforce, in keeping with 'community based rehabilitation' recommended by the WHO, the study recommended. The DMHP in Tripura is beginning to use ASHA workers in basic mental healthcare, district administration officials told IndiaSpend.
Beyond buzzwords and token 'self-care' days: What workplaces can do to help
"As long as more people with schizophrenia working in positions do not disclose their disability," said Rangaswamy, "the fact that people living with mental illness can do well in jobs can never be propagated and scaled up." Even in this report, only one of the women, Amrita, was willing to use her real name.
Bhardwaj was able to disclose her mental health condition to one workplace. Allowing the flexibility of WFH and the option to take mental health days would help someone living with psychosis, said Bhardwaj. After a severe episode, she wasn't able to show up to work, and disclosed her condition for the first time to the media house she was working with, Arré India.
"My boss and HR were nothing but supportive, and talked about how they also take mental health days off. They were always ready to adjust their schedules according to my doctor's visits. This really made me feel included and respected."
Being able to disclose one's mental health status can help relieve pressure, says Bhardwaj, "because it is very uncertain how and when your anxiety hits you at a workplace, and then you're just ashamed of yourself or embarrassed about your episodes".
"Even if employers are very cooperative or supportive, often other people who work alongside are unwilling to accept the person with mental illness so there is marginalisation even within that setup," Padmavati pointed out. Additionally, sensitisation workshops on disability and mental health for employees are required so colleagues treat those who disclose their disability with respect, she said.
A concerted effort is required from the government, the disability community, families, mental health professionals, employers who have successfully employed people with schizophrenia to lobby and effectively sensitise, said Rangaswamy.
"If there were benefits and understanding to my coming out, I would definitely prefer to come out," Amrita agreed.
Being able to disclose one's mental health status can help relieve pressure, says Pia Bhardwaj, "because it is very uncertain how and when your anxiety hits you at a workplace, and then you're just ashamed of yourself or embarrassed about your episodes". Amrita agrees, "If there were benefits and understanding to my coming out, I would definitely prefer to come out." Illustration: Gulal Salil
*Names changed to protect privacy.
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