Hi,

This past weekend, Here’s what that means in English: how can people with real-life experience of mental illness use their story to drive change?

I shared space with two remarkable activists, from South Africa and from Belize*, and answered questions from a third, Jackee Schess, CEO of Generation Mental Health, the US non-profit that had organised the panel. Between the four of us, we’ve lived with a whole litany of mental illnesses, from bipolar disorder to borderline personality disorder to depression and anxiety. And we’ve all tried to fight stigma by openly talking about our experiences.

A quick aside for those not familiar with my bio: I "came out" with my story of living with depression, anxiety and self-harm four years ago, I was amazed that the articles got tens of thousands of views and hundreds of comments from all over the world. I wanted more of this high, so Through Twitter, I became friends with some phenomenal activists and survivors and got involved with low-key advocacy. But it wasn’t after my son was born, in January 2018, that I became convinced that mental health wasn’t something I wanted to dabble in part-time. I applied to The Correspondent, which brought me on board as the world’s first "Sanity" correspondent (chuckle).

Of course, the process of turning my story into a profession wasn’t nearly as neat as that paragraph makes it sound. There was torturous insecurity and constant impostor syndrome – I didn’t have a psychology or psychiatry degree and wasn’t an "expert"; so why would anyone listen to me?

Sure, my story helped some people believe that they were #NotAlone. But can laypeople sharing stories really change anything in the larger picture? Can they help shape policy, or influence the mega social structures that determine the course of our lives?

Sharing stories and busting stigma is trending in 2020. But what’s the underside to it, and when not to do it?

The limits of storytelling

These questions figured prominently on our weekend panel. Sample these snatches from the conversation (reconstructed from memory):

Jackee: I know all of you are big on sharing lived experiences. But are there situations when you feel like you shouldn’t?

Chantelle: I think of this a bit like living with an insulin problem. You don’t need to talk about it everywhere. Not every person will appreciate your sharing such details about your life. Stigma comes in all kinds of forms and in all sorts of places, some of them unexpected.

Sahar: Sharing my story isn’t giving me big answers. It also triggers me by reminding me of a painful time of my life, but I do it anyway because it might help someone. Being from Belize, where very little resource is dedicated to mental health, I am keenly aware that we need to figure out what we can do rather than just talking.

My thoughts on this issue? First, I learned very quickly in my advocacy work that my time and energy are precious, and I shouldn’t waste them trying to make allies out of everyone I meet.

Second, the purpose that sharing your story serves depends entirely on your context and your own goals. In my country India, spreading awareness on mental illness is still a crying need. But as stigma falls away bit by bit, activism has to move on from simply creating awareness to demanding access to mental health services. The last thing you want is a country where people are "aware" that they need help, but are then left high and dry because there’s no help available.

And third, I have lost much of my scepticism about what laypeople’s voices can achieve. Here’s just one example. In India, where the quality of media coverage on suicides has been shockingly bad, a few of us came together with a single informal goal: pushing editors and reporters to stop writing "committed suicide", since the word "committed" cues criminality. In the beginning, editors were slow to respond. But the authenticity of our appeal – many of us have lost someone close to us to suicide or are survivors – played a big role in breaking through that indifference and forcing a shift in language.

Earlier this year, was launched under the aegis of India’s leading mental health policy advocacy body (full disclosure: I am a pro bono adviser to it). It’s a landmark effort, and I’d like to believe that at the heart of it is respect for lived experience.

Coming back to the panel, Chantelle made a priceless point tied to this sensitivity to context and the importance of carefully choosing your goals. When we use heavy words like "influencing policy", we tend to imagine big outcomes: such as shaping laws and protocols on the national or international stage. We tend to forget that we need to start by shaping the policies that impact our local communities. Aiming too high is a sure recipe for frustration and disappointment.

*PS: Thanks to the organisers of the panel for, first, incorporating lived experience on their agenda. Recently, Forums such as this help.

In fact I’ve recently spotted a couple of instances of research and advocacy organisations looking to induct people with lived experiences as bona fide experts, such as in This is radically new in a field that has been under the thumb of the psy- disciplines and the pharmaceutical industry.

Second, I am thankful that the hosts went with an Indian, a South African, and a Belizean for this panel. It isn’t everyday that you’ve 100% of a mental health discussion represented by countries that aren’t the US or Britain.

What is your take on the power of sharing lived experiences? Do you share your own story? Why or why not? Do reply in the contribution section under this newsletter on our website, or email me.

Until next week.

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