World Mental Health Day is a chance to listen to those with the condition – the biggest experts of all

In 2019, mental health is increasingly taking centre stage as governments, foundations, companies and entertainers step up to talk about it – and act to improve it. We have seen mental health on the agenda at highly visible events, such as the UN General Assembly and 2nd Annual Ministerial Conference on Global Mental Health. And big names have championed the issue, from New Zealand’s Prime Minister, Jacinda Ardern, unveiling her “wellbeing budget” to the appointment of Lady Gaga’s mother, Cynthia Germanotta, as a World Health Organization goodwill ambassador for mental health. The issue has clearly gained visibility.

But there’s still room for improvement: countries still do not spend the recommended 5% (for low- and middle-income countries) or 10% (for high-income countries) of their health budget on mental health. In the United States, only about 40% of those with mental health conditions receive treatment – a staggeringly low number that is still well above that of low- and middle-income countries. Prejudice and discrimination still permeate our societies.

On this year’s World Mental Health Day, we want to highlight the important voices of people living with mental health conditions as powerful change agents. People living with mental health conditions are critical components in the effort to reduce mental ill-health and are finally beginning to be recognized as such. They are not only playing a key role in reducing prejudice and discrimination, but also providing important support to others affected by mental health conditions. In a world where the needs of people dealing with mental ill-health – from mild to severe conditions – will never be met solely by psychiatrists and psychologists, we hear time and again of the need for “non-specialists” to be equipped with the skills to help those dealing with mental ill-health.

Peers – those with lived experience of working in care and other community settings to provide direct support – have long been an important adjunct to the woefully under-resourced mental health workforce. Groups like the Global Mental Health Peer Network (GMHPN) are driven by people with lived experience of mental health conditions and focus on empowerment, recovery and peer support. In these settings, lived experience is the driving force behind destigmatization, quality of life, equality and equity. GMHPN works to ensure that people with lived experience of mental health conditions throughout the world have the platform to share their experiences, views, opinions and perspectives in an established and sustainable structure.

Critically, GMHPN allows those with mental health conditions to combat a view of mental illness put over in the media, which often lacks nuance and accuracy and comes across as excessively negative. Such characterization perpetuates misunderstanding and fear towards those with diagnoses of mental illness.

What we don’t see enough of are the millions of individuals who are living, working and healthily managing their own mental health conditions. One organization, the Stability Network seeks to unleash the potential that this group of individuals holds, bringing hope to the millions who face mental health challenges. The Stability Network is a growing cadre of people living and working with mental health conditions, including the authors of this post. They speak out about their own mental health conditions to inspire and encourage others.

The Stability Network trains its leaders to own and share their own stories, building strength in its members by empowering them to take control of their narratives while showing others they can do the same. Through speaking and writing opportunities, the Network lives what the literature suggests: to break public and self-stigma, Stability Leaders demonstrate “contact” – the idea that sharing time and space with an othered group, like people with mental illness, can reduce stereotypes – by sharing their stories and showcasing their own vulnerabilities. The message in this hidden strength also contains the hope for a life beyond recovery: Stability Leaders are thriving in their daily lives including at work.

Communities like the Global Mental Health Peer Network and the Stability Network are critical to addressing the burden of mental ill-health that societies are experiencing today. These need not be formal; but they also do not need oversight by “expert clinicians”. In a way, people who have lived these experiences will always be the greater “experts” in their conditions than people who have studied them.

In our partnerships and communities, we’ve seen similar examples crop up, from the World Economic Forum’s Global Shapers network and their mental health initiative to the Zimbabwean grandmothers who make the Friendship Bench a place of warm welcome. We’re seeing advocacy for these types of solutions from global players too, including within United for Global Mental Health’s grassroots-led Go Speak Your Mind campaign. In all cases, an emphasis on the journeys of those experiencing their struggles remains at the centre of the work. This shift in approach, towards one where people with lived experience are the experts, is a great outcome of the philosophy mental health advocates have been trumpeting for years: nothing about us without us.

But before we celebrate, we need to acknowledge that even these leaders, sharing their stories to help others, continue to face challenges in maintaining their health. Experiencing mental illness and recovery rarely happens in a linear fashion. Many people who have a severe episode of mental ill-health will recover and then experience another episode. Being a member of the Stability Network, or having sat on the Friendship Bench, does not guarantee that someone is now immune to their condition. That is why fostering supportive communities is so important to the long-term health of our societies.

While there is much to be done to ensure everyone around the world gets the care and support they need to live full lives, we are and should be increasingly looking to people with lived experience as a key part of the answer. Working with them, we can reduce the prejudice and discrimination that exists and reduce key constraints, such as access to care. But they need support to achieve this. Celebrate people like us in your organization, in your community, and in your household. Working with us, progress will be made further, faster.