Neha Kirpal’s mother lived with undiagnosed and untreated schizophrenia for over 20 years, with her two children as her primary caregivers. The paranoia and hallucinations of the illness tore her family apart and drove her mother to leave her own home for over a decade. Finding her. Treating her. Caring for her while also growing herself up was a long, hard journey for Neha. 

Today, she is the co-founder of some of the largest mental health organisations in the country; Amaha and India Mental Health Alliance, building and shaping a care ecosystem across the country for families like hers. As told to The Better India.

For the first 20 years of my life, I wanted to be as far from my truth as possible. A mental-health story wrapped in shame and stigma was not something I wanted to own in any shape or form.

We didn't have a name for it.

When a parent lives with mental illness, it takes a while to even recognise the dysfunction you are living with. Home was stressful, unpredictable and often challenging. But we had no name for the illness at the centre of it, and no understanding of it.

That changed in 1994, when my mother took my younger brother and left home. She was gone for 10 years.

In her absence, my father and I began seeing doctors, and finally learnt what our family had been living with: paranoid schizophrenia. The hallucinations had filled my mother with fear. That fear and paranoia were why she left us.  

Looking for them, and trying to bring them to safety & care, became a large part of my life for the next decade.

The child of a parent with mental illness carries fear, anger, resentment, fatigue, guilt and shame. These feelings stay inside you and touch every part of your life: your friendships, your school life and, above all, your sense of self.

It felt as if an invisible gaze followed me everywhere, full of judgement. At times I blamed myself. At times I blamed my mother for having a mental illness. At times I blamed God for crippling our family this way. How could I protect a parent from themselves?

Even when you are overwhelmed or burnt out, you feel the person you love is suffering so much more that their suffering must come first. So you minimise yourself. Settling for less becomes the mode. For me, it meant a life of neglect and a very low sense of self.

I also carried a dream of what a normal life might be, and I kept parts of my life sealed off just to feel normal. For the longest time, I never told my school friends and teachers what was happening at home. Shame, secrecy, and embarrassment were a constant companion.

The return of a stranger 

When we found my mother and her treatment began, a new phase of my caregiving started. Before, I had longed and worried for a parent who was absent. Now I was actively managing her hospitalisation, medication, and treatment options, which went on tirelessly for years to come.

I was reuniting with my mother after a decade, yet I could see no part of a mother in her. The person who came back was someone I did not recognise in any way. The illness had the capacity to break relationships, and it would take us a lifetime to mend & heal together. 

I was in my 20s, treating a parent against her will for an illness she didn't realise she had, while trying to find a job and earn a living. It made me hyper-independent: realising I don't have anyone to fall back on, so I must take care of myself. It was the start of my journey of self-help; grieving my childhood losses with the help of friends, therapists and support groups, as I tried to find a renewed sense of self and balance. 

Adults who looked away 

What doesn't help is how little the world knows about mental illness, and how hard people find it to engage with. The words are often missing or not enough. The expression is........

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