Navigating psychosis as a family within the contradictions of stigma and possibility
Trigger Warnings: mentions of mental illness, stigma, psychosis, trauma, diagnostic labels, institutionalization, abuse, self harm.
One of my fondest memories of my grandmother is sitting with her in our living room in the mornings, listening to her singing “Jaagorone Jaye Bibhabori” after guzzling down her 7th cup of cha for the day. She had one of those voices that could effortlessly emanate warmth that felt like an embrace and leave you awestruck. This is often immediately followed by a flashback of me sitting in that same living room with all my neighbours during a get-together, singing that song together and quickly realising I was confidently singing the words wrong. My body remembers the embarrassment sooner than my mind can replay that memory to completion. A sharp nudge from someone sitting to my right mid-song, a couple of laughs and incredulous looks, my face going red, my eyes darting to find the Gitobitaan closest to me so I can sing the rest of the song right, hoping to God no one else noticed my mistake. An emotion so powerful that it’s making me squirm even as I write this. I remember berating myself, thinking I should’ve known better. I should’ve known better than to believe Thamma wasn’t making up the words. Fondness and Embarrassment. Adoration and shame. Love and resentment. Care and fear. An entire lifetime of trying to get used to the whiplash of switching between two vastly different realities, both of which were indisputably mine.
Growing up, I’ve had the privilege of witnessing mental illness/psychosis* in the complete absence of clinical terminology, diagnostic labels and stigma for a large part of my childhood before they got introduced to my vocabulary and awareness. The shift to being the granddaughter and niece of two people with “severe mental illness” was jarring. It felt like someone split apart my realities into two- one that existed within the four walls of my home, and one that existed among the silence, the stares, the subtle avoidance and fear right beyond the threshold of my family home. My privilege existed in the former realities of knowing my Thamma and Kaku (paternal uncle) as people first, observing and learning how my family cared for them, how we celebrated every special occasion with laughter and music just as we navigated crises with quick decisions and nerves of steel. My privilege existed in the language I was provided by my family to familiarise myself with Thamma’s schizophrenia and Kaku’s bipolar disorder with psychosis. It was completely free of clinical jargon and more to do with what we might notice in them and the know-hows of when or where to help and to ask for help ourselves. It was the same privilege that taught me to pick up pity or judgement in any room I walked into and immediately fortify myself and my loved ones with impenetrable defences.
*Fact: Historically, persons with mental illnesses have been cared for within social systems in the country. But with increasing crackdown by colonial legal systems, “clinically insane” people were seen as “threats to civilization” and were segregated from mainstream society.
Read more
This isn’t to say that this journey has been easy or uncomplicated for me or my family. My grandmother was first diagnosed with psychosis in the 1950s, around the same time that the first version of the DSM (diagnostic statistical manual) was published. At this time a lay person’s understanding of mental illness and its prognosis were far more elusive than they are now. My grandfather took the decision to bring his ailing wife home post-institutionalization so she could stay with her family and be around her children as they grow up. In a country where marriages are allowed to be annulled* before a magistrate on grounds of a spouse’s “unsound mind”, the story of my grandfather’s resolve, courage and sacrifice as a husband and father to “keep the family together” left very little room for stories that perhaps needed attention. Stories of his subsequent journey as a husband and a caregiver to his wife while being a father to his children, the financial burden, his struggles around asking for help and the emotions he found difficult to hold space for and the anger that took their place. Moreover, the children, who were left to their own devices to survive in a stigmatised world while taking care of their mother and emotionally unavailable father, and the long term effects of a family that had to deal with stigma by pretending it didn’t bother them.
My parents keep telling me that it was harder for my grandfather and the rest of the family to understand my Kaku’s (paternal uncle’s) diagnosis and walk alongside him in his subsequent journey with mental illness than it was for Thamma. I know now that a lot of that struggle had to do with how both of them had vastly different experiences and responses to living with psychosis. While Thamma was so obviously disconnected from our collective realities, she had unique and endearing relationships with each one of us. It was…easy to enter her world, cherish that unique relationship and take care of her, much like how one would take care of children. We never challenged her “delusions” or ways of being, but asked questions around them, engaged with them and our realities co-existed without much friction. She had unique names for each of us, funny sayings that would always make us laugh and her enchanting voice, filling up our days with a Geeta Dutt here and a Mambo Italiano there. On the other hand, my Kaku’s psychosis would not entirely disconnect him from “reality” per se. It would either bring him unimaginable psychological pain and a deep-seated fear of being punished, or drive him to a point of intense rage that would push him to become violent- a state that would inadvertently and eventually bring back the crushing guilt of being unworthy of our love and care. Violence- physical and verbal- towards family and others, self-harm, calls from the police station, repeated instances of forced institutionalisation, going missing for days at a time- each episode would take a toll on us as a family, making it increasingly difficult to separate him and his actions. I saw my grandfather gradually find it increasingly difficult to see his actions as part of his illness and ultimately distance himself from his youngest son. For me and my parents, forgiving and going back to caregiving was hard, but not nearly as hard as it was to convince him to forgive himself while holding him accountable for his actions.
*Fact: “Unsoundness of mind” of a spouse constitutes grounds for divorce and annulment of marriage under the Hindu Marriage Act 1955, Special Marriage Act and the Indian Christian Law
Read more
My training and subsequent journey as a mental health professional was where I first learned an alternate (clinical) language to conceptualise and understand my family members’ experiences, while opening myself up to the larger context in which psychosis shows up in people’s lives- a language that opened me up to a lot information, but not necessarily clarity. Over the years, theory and research, kind professors and supervisors, a wonderful network of peers and consistent therapy has been supporting me in carefully deconstructing my “lived experience” and linking it to the context of larger biopsychosocial factors that govern our lives in covert and overt ways. In these years of studying, practising and working with people who enter the mental healthcare system in India, I find myself sitting with more questions, confusion and anger than ever before. I struggle to make sense of the system’s obsession with getting quicker and more efficient at identifying when someone’s gone “insane” rather than exploring what led to it and what lies ahead. I see how this informs the contradictions that exist in the single stories around psychosis being a “tragedy” and a “danger” that makes society feel pity for the person and their family while also distancing themselves. The contradictions echo through the different layers of our ecosystem- interpersonally, in communities, in healthcare facilities, in professional policies and even in our legal system. I think about the rude reminder I got during my days as a trainee psychotherapist when my professor reminded me that most Indians, once institutionalised, rarely get to go back to their homes and families*– a reality I had never considered in all the years I spent fiercely defending my family’s decisions. These systems that claim to care for us, systemically and systematically stay away from acknowledging psychosis as an expression of deep pain. It puts innumerable people at risk of falling through these gaping chasms of the system, while also placing caregivers and healthcare professionals at risk of compassion fatigue and burnout.
A dear friend who shares my love for shows recently urged me to watch the webtoon-turned-show Daily Dose of Sunshine on Netflix, a Korean drama that follows a nurse working in a psychiatry ward of a medical college and hospital. He said he wants to pick my brain, specifically because he knows I would relate to the show and have a lot of thoughts around it. I couldn’t bring myself to watch beyond the first 2 episodes, and my logical brain knows it’s because the show’s managed to hit the nail on the head in more ways than one. The facility looks or at least appears to function in a way that is meant to make people feel like this is a good system run by professionals who know what they’re doing. The professionals appear compassionate and humane in how they treat the patients. There’s a doctor giving the nurse a list of dos and don’ts on her first day, there are colleagues reassuring her that everyone messes up on their first days. And yet, as a mental health professional, I began to see the gaps far sooner than I was supposed to (as a viewer) and found myself feeling agitated about the things they were glossing over. The focus on keeping away sharp objects, having an easy exit strategy out of any room when with a patient, “attend to their feelings, not their words” but only to avoid a messy situation still conveyed a clear message: mad people are dangerous and need to be saved from themselves.
*Fact – While there is lack of clear data, approximately 1/5th of the homeless population in India has diagnosable severe mental illness. Research indicates that severely overburdened healthcare systems, inadequate funding and insurance, stigma and lack of community resources are some factors contributing to homelessness in persons with mental illness.
Read more
It took me back to the perspectives and tools introduced to me in my training that barely touched upon how to care for psychosis beyond physical containment, sedation and medication. The living conditions are mostly inhumane and professionals (often burnt out and desensitised) rarely engage with their patients with compassion or respect. Long term therapeutic interventions around psychosis largely focus on placing the onus on the individual to work on rehabilitating themselves into mainstream society post a psychotic episode, emotional regulation and preventing a relapse. Therapeutic interventions with families and loved ones, if at all, focus on building awareness around the what and how of psychosis and their acceptance around the diagnosis. In both cases, delving into why psychosis shows up in a person’s life is largely overlooked and the need for understanding trauma, formative life experiences, socio-cultural stressors and the collective responsibility of fostering hope and healthier relationships of care remain unaddressed. Systemically, their diagnosis and subsequent course of illness leads to living the rest of their lives as discarded citizens: losing employment, the right to vote, inherit, make independent choices around their health or even start a family and remain dependent on their families for all means and purposes.
When I go back to thinking about my family and what has always been known and familiar to us, I find a lot of flaws in the ways in which we tried to care for Thamma and especially Kaku. However, along with all of the rage, I also find comfort in the innumerable ways we were able to show up for him that I might never find in clinical literature. After my Kaku’s passing last year, our living room was filled with people- relatives, neighbours, friends- who sat together and shared stories of how much they loved him and are going to deeply miss him. Stories of his love for Mithun Chakraborty’s films and songs, his impeccable dance moves, his favourite food, when they felt cared for by him, when they sat with him to listen to his fears and offer him comfort or took care of him the best way they could when he has landed up in their homes during a manic episode–stories that spoke of how loved and cherished he was, contrary to what his thoughts would always try to convince him of. I think about how I know in my bones that I inherited my love for music from Thamma. So much of who I am and what I bring to my work is the legacy that Thamma and Kaku have left behind and a part of me wishes they knew that. I often think about how when we see a person’s life through the narrow keyhole of stigma, we might only see tragedy and feel fear. Stigma doesn’t allow for us to see insanity as a response or as resistance to failing systems but tries to pin the failure on the person for not being good enough. In doing so, it doesn’t let us fathom the multiplicity of stories that surround the person and their identity beyond their mental illness and the abundance of love and care that they are capable of giving and receiving. It makes me think (and perhaps hopeful) about how care and support often seem complicated (and perhaps it needs to be) but may be far easier than one might be led to believe.
-Ahana
Ahana (she/her) is one of the co-founders of Tangent Mental Health Initiative, working as a mental health worker, trainer and supervisor. A counselling psychologist by training, she has always been deeply influenced by the intersections of the social, the cultural and the political and the profound impact existing systems have on people’s identities and therefore, their mental health. Apart from her work as part of Tangent MHI, she is also the program coordinator for a PG Diploma in psychotherapy and counselling with children and adolescents at TISS, Mumbai where she has been a faculty and supervisor for 2 years now. She hopes to continue consulting with individuals and families and engage with advocacy and capacity building work while holding onto values of social justice and intersectionality. She prefers to express herself through music and doodles- both of which allow her to hold on to moments that are otherwise fleeting.
Welcome to TangentMHI! 