In my third year of medical college, while studying forensic medicine, I came across a section on schizophrenia that felt eerily familiar. As I read, I recognised my mother in the descriptions, and it struck a chord somewhere deep within me.
Determined to share my thoughts, I went home and sat my brother, Anand, down and asked him to read the passage. He had studied the same material the year before and passed his medical courses.
When I asked if he thought it described our mother, he said, ‘Yeah.’
‘Wait, you knew?’ I replied, stunned.
‘Yeah. Dad told me when I was in class ten.’
I was shocked.
‘And you never told me?’ I asked.
His response was simple: ‘I thought you knew.’
I was bewildered. ‘No. Nobody ever told me; how would I have known?’
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For the next few days, I was in a daze. My brother had known about our mother’s condition since tenth grade. I had been in grade nine at the time. All these years, I had held my mother responsible for things I believed she had done wrong. This new knowledge of the possibility of an illness driving her behaviour was perplexing to say the least.
I kept asking, ‘Why didn’t you tell me?’
But no one had a satisfactory answer.
Eventually, I learnt that my mother had been diagnosed with paranoid schizophrenia and had been receiving treatment. My father had been taking her to a psychiatrist. As I began to understand the situation, I had many questions. ‘Does she know she has schizophrenia? Have you ever told her she is unwell? What about her sisters and brothers? Do they know?’
My father replied that nobody knew. This was not a conversation that anyone knew how to initiate. Even if anyone suspected, there was silence on all sides about why she may be behaving in the way she used to. There seemed to be no one who could connect these dots for us, or indeed for her. It seemed that as a family, we just needed to figure out what to do and how to move forward with our lives, as best as we knew.
***
It has always been hard to find words to explain my mother’s behaviour. Explaining took so much out of me. And when you are met with disbelief, it feels like you are disintegrating, like parts of you are fracturing because someone refuses to accept your reality. People would sometimes say, ‘We believe you,’ but their faces would betray them. I could tell they did not. How does one find the words to describe what is a delusion or hallucination when one does not know what it is? It makes you wonder whether it is even worth explaining at all.
Once I found out about schizophrenia, my mother’s diagnosis and was able to read about it, an entire world opened up. Each phenomenon that the books described had me nodding. I had finally found words and experiences that were known and relatable. While I grappled with the knowledge that what she had was a known mental illness, I realise now that parallelly some of my inner world and behaviour had also started changing.
By the end of medical school, I decided I needed to share this with people who mattered to us, to her. I told my father that my mother deserved for others to know about her illness so they could decide for themselves whether to maintain their friendships with her. And that’s where another chapter of my journey began.
***
When a mother lives with mental illness, the needs of caregivers and the emotional toll on siblings like us often go unseen—a silent hollow within the very pillars of our healthcare and social systems. I have often faced this dilemma even as a professional in the last two decades of practice.
Should the needs of a carer or family member of a person with mental illness take a backseat while the space needed for the mental illness and its management takes precedence?
Who decides when and how these differing needs are prioritised?
I am no longer ashamed to admit that a few months after she passed away, I felt a profound sense of ongoing and deepening relief. The weight of caregiving responsibilities only became apparent in their absence.
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I still grapple with the grief of not having the mother I needed during my childhood. Coming to terms with her reality and my own has been a lengthy process. I had to accept that I would never have that idealised version of motherhood. I have been privileged to be able to access a helpful and deeply trustworthy therapeutic space over the years for intentional inner work. Much of my personal therapy journey was occupied by this relationship and making meaning of it.
***
I want my narrative to acknowledge the reality of living with mental health challenges—the struggles, the moments of connection and joy and the ordinary days in between. The journey of growing up around mental illness and resolute life forces has profoundly shaped my work and my understanding of mental health. I believe that textbooks or clinical training do not fully capture the essence of this lived experience. I believe that participation in the complexities, the stigma and the rawness of mental health struggles first-hand allows me to connect with the families I meet with a broader horizon than I would have by just studying about it. I hold on to the belief that behind every diagnosis is a person with a unique story, often filled with pain and resilience, burden and lightness. Seeing siblings, parents, or children sharing their pain with humour and lightness reminds me of the resilience of the human spirit. It encourages me to honour my mother’s complexity and continue to find strength and connection in my own life.
Excerpted from Homecoming: Mental Health Journeys of Resilience, Healing and Wholeness edited by Neha Kirpal and Nandini Murali with permission of Westland Books.
