Peer Support and Community

When you read that over 150 million Indians live with mental health conditions (National Mental Health Survey, 2016) you’re probably wondering if we have an adequate number of mental health professionals to address their needs. The short response: no. India has approximately 7,000 practising psychiatrists, and even fewer clinical psychologists and allied professionals for 1.39 billion people.

But do you ever find yourself wondering what assists ‘recovery’, and if that’s possible at all? In this article we highlight these ‘peripheral’ concerns and questions on recovering from mental health conditions, with a focus on peer support.

Let us begin with the story of Beena, 24 years old, who finished her studies recently. Beena’s struggle with an anxiety disorder had become a barrier to finding a job. She tried her hand at three jobs but wasn’t able to hold on to them because ‘she didn’t fit in’, and was seen as an underperforming employee. Her parents chided her for taking life too easy and living off the family’s money, compounding her miseries.

She wished someone would understand her struggles and pain.

This is where communities who abide by the principles of peer support can step in to help. Peer support works on a recovery-based approach: the premise that people with lived experience can help others with mental health conditions to work through their recovery journey, to lead the life they wish, with or without their symptoms.

The peer support approach marks a departure from the purely biomedical approach focused on symptomatic recovery. Peer support is based on rights and recovery, to promote a healthy and fulfilling life as per your own choices.

As people with lived experience can empathise with others going through similar life experiences, the relationship is built on mutuality, trust, and belongingness to a community which is so, so important.

After initial hesitation, Beena opened up about the troubles that faced her, of which her family was unaware. To be understood by the group came as a huge relief, as opposed to being labelled ‘lazy’ or ‘having a negative attitude’. She felt freed from the hierarchical cage that was home. Her struggles found validation. The community became her new virtual home.

Peer support, with a strengths-based, people-first perspective opens conversations on your dreams and ambitions and provides support to work through them. Rather than being judged or limited, peer support provides hope, reassurance, and practical support, which can range from going to the market or opening a bank account.

This can be a sharp contrast to an outside world focused more on deficits and reductive of one’s symptoms. A lack of safe spaces leads to bottling up of struggles, and isolation often goes unaddressed. Some say this isolation and discrimination can be as hurtful as the health condition itself.

Peer support recognises people’s lived experience as their main ‘expertise’ in helping others on their recovery journeys. The approach is aware of social, cultural realities such as employment, family violence, or discrimination that impact our mental health. It aims to socially include people as equal members of communities, for which we need guarantees of our social, economic, cultural rights - as much as access to affordable, quality mental health care.

It is about supporting people in making their own decisions regarding their treatment, personal relationships, ambitions and goals. Given the absence of narratives of lived mental health experiences from the mainstream, peer support can help bridge the gap.

Tapan approached a psychiatrist (the third one) for help for his teenage son. The psychiatrist allotted them a mere five minutes and handed out a prescription. When after several visits Tapan demanded to know what his son was being prescribed medication for, the doctor callously scribbled on the reverse of the prescription: ‘Schizoaffective Disorder’. When Tapan asked to know more about the diagnosis, he was left aghast at being told to ‘Google search it’.

Thoroughly disillusioned by this experience, Tapan began seeking more information, which led to his discovering and joining a peer support community. The guidance he received from this community became a pivotal point in the family’s journey. They sought help from another professional who was compassionate, which helped in the process of recovery.

Tapan’s experience shows how caregivers too require support for their own mental health, and space to have conversations about how to support their loved ones.

In our context, families play a critical part. A family member’s reactions can range from denial of the situation, contributor of further distress, to becoming a supporter. An alliance between the person and the relevant support network has worked well in our experience. Participation in such conversations, with consent, can help people know more about their lived experience and learn ways to provide a supportive environment at home.

Peer communities are only a microcosm of a healthy ecosystem that needs to percolate to society at large. Not all hope is lost: we have the Mental Healthcare Act of 2017, which tries to shift the axis of power by emphasising the rights of people with mental health conditions. An example is the provision for making Advanced Directives, that let you chart out the path to mental healthcare on your own terms.

We see hope in interventions like QualityRights Gujarat that provide pathways to mental health care in line with your will and preferences, allowing people to take control of their lives. This peer support intervention was introduced within formal public mental health facilities for people with lived experience to work with others through recovery sessions and hold group meetings. A unique intervention in India, it is financially supported by the Gujarat government’s Department of Health and Family Welfare. A new intervention called UPSIDES now aims to develop a scalable model for peer support in future.

Another peer support initiative, Bipolarindia, began in Mumbai and now has chapters across India, working as a hybrid, online and offline model. Since the onset of the Covid-19 pandemic online peer support communities have increased as well.

Despite evidence of its effectiveness, peer support has not been fully utilised in India. We owe it to our communities to continuously do more and expand on the same, by providing paths to foreground people’s lived experience, and creating communities that are empathetic, non-judgmental, and offer spaces for people to lead healthy and fulfilling lives as they define them.

Lastly, for a peer support community to thrive, constant introspection is needed to ensure that it is internally freed of the very hierarchies that it seeks to undo.

Vijay Nallawala is an author and entrepreneur. Inspired by his own lived experience with bipolar disorder, he runs a Peer Support Community, Bipolarindia

Jasmine Kalha is a research fellow and programme manager at the Centre for Mental Health Law and Policy, ILS, Pune

Curated by the Centre for Mental Health Law and Policy