Living with schizophrenia– what about dying with it?

Blog by:
Dr. Nirmala Srinivasan, ACMI, India
Disability activist and Ashoka Fellow

The theme of “Living with schizophrenia” is important, but to me dying with schizophrenia is just as important.

Parents, families, friends and mental health workers are dogged by questions of semantics, of the exact definition and scope of schizophrenia. How is it different from mental illness generally? Or from schizophrenia spectrum disorder? At ground zero the challenges associated with one or the other is only a difference of degree, and not of kind.

The diagnosis doesn’t matter. What matters is the trauma of social death. Polypharmacy prescriptions are proliferating just like newer and newer drugs. “The most striking overall finding of ISoS is that the current global status of over half of these subjects —56% of the Incidence group and 60% of the Prevalence group—is rated as “recovered.” vide Recovery from Schizophrenia: An International Perspective (2007).

Clinical recovery is not synonymous with social recovery. Living with schizophrenia becomes a revolving door of denial, fear, isolation, admission and discharge, medicines and side effects; drop-out, divorce, joblessness; families in disarray and dismay; suicides and stigma. Social death is factored into the lives of even “recovered” persons so much so the lines between living and dying get blurred. Let’s consider those the challenges of those literally living and dying with schizophrenia in place like India where I work.

About 70% to 80% of mentally ill persons in India live with their families. As we all know, the caregiving family also has a lifespan influencing the quality of care to mentally ill family members. The challenge of lifelong care looms large over many Indian families.

Almost every month, the Indian police respond to calls from residents and recover people with mental illness who are dead or dying without care. How does it matter if they are clinically recovered? A recent article in Times of India (dated 08.09.14) reported of a 60 year-old doctor who died of starvation because he had depression ; his 55 year-old brother, an ex- India Air Force officer, lived with his corpse because the boundaries between life and death had no meaning.

Schizophrenia symbolises life without living and death without dying.