When I decided to specialise in Psychiatry after graduation, many friends and relatives raised their eyebrows. Even my mother mockingly asked if I was going to be a ‘mental’ doctor — using a Malayalam word usually used to tease persons with mental disorders.
In those days, introducing yourself as a psychiatrist invited curious stares. Like psychiatric disorders, the doctors who treated them were seen as mystical characters.
It took years to affirm that a psychiatrist is like any other health professional, and that psychiatry is a branch of medicine that draws strength from allied disciplines like clinical psychology and psychiatric social work.
Are we hearing lived experiences?
Times have changed. Today psychiatrists are heard and respected. But has the status of persons with mental disorders changed? This question gains relevance with this year’s Mental Health Day theme: ‘Lived Experiences Heard: Real Voices, Real Change.’
On World Heart Day, Cancer Day, Diabetes Day or Kidney Day, we see patients sharing their lived experiences to build awareness. Such sharing by persons with mental disorders is rare. They are unsure how society will treat them if they speak openly about life with a psychiatric disorder.
Negative and discriminatory stereotypes compel many to stay silent, even about their brilliant comeback after treatment. Some carry internalised shame, applying societal prejudices to themselves. And it is in this scenario that we ask them to speak.
Lived experience is first-hand knowledge gained by those who have lived through a mental health condition. It is certainly valuable information. Society has heard such narratives from Anupam Kher, who spoke about his treatment for bipolar disorder, and Deepika Padukone, who shared her experience with depression.
Do such disclosures inspire the common person to speak out? They can, but only if we make it safe and acceptable. Facilitating a culture where real voices with psychiatric disorders are heard will bring revolutionary change in policies, services and attitudes. However, there are barriers.
Fight stigma to break barriers
As Goffman defined, stigma is an attitude that is deeply discrediting — one that taints the bearer and reduces social value.
When stigma rules many social interactions, sharing lived experience becomes difficult. The very doubt that my words will be devalued because of this illness tag is a second disorder — caused by a prejudiced society.
This may inhibit many from sharing lived experiences. However, stigma would not go away on its own, for that we need efforts at multiple levels.
Language matters
Never use terms like mental, psycho or mad as insults. In Malayalam, derogatory words are casually used in public spaces to tarnish opponents, often hurting persons with mental illness and eroding their sense of value despite being productive and responsible.
Avoid devaluing speculations. Media reporting that a crime was committed by a ‘mental patient’ discredits a large section of persons with psychiatric disorders. It is better to say the person is reportedly suffering from a mental disorder.
At home, do not isolate them or trivialise their opinions. Encourage expression and listen respectfully. Asking ‘Did you take medicine?’ in front of others is shaming. Instead, ask privately. Do not label normal anger or sadness as relapse. Learn early signs and compassionate ways to intervene. Such approaches will build confidence to speak — when they want to.
In community, encourage them to voice concerns when human rights or legitimate medical insurance are denied. Ensure a supportive presence when they disclose lived experiences. Storytelling should be voluntary, safe, and without sensationalism. Let it stimulate participation of the entire society.
A stigma-watch model, tried elsewhere, can be replicated here. Persons with psychiatric disorders, their families, or concerned citizens can flag demeaning portrayals in media to a designated body — the State Mental Health Authority or an approved professional body — which can educatively inform media and request amendment or removal, citing scientific rationale. Results elsewhere are encouraging.
THE REAL CHANGE
If the lived experiences of persons with psychiatric disorders are listened to with respect and a meaningful engagement is facilitated, their world will change. They too have the right to say — nothing about us without us. To make this happen, let us eradicate stigma.
We moved from mocking the ‘mental doctor’ to respecting psychiatry. The next step is to move from respecting psychiatry to respecting persons with mental illness. Only then will real voices be heard, and real change follow.