So, this post isn’t strictly to do with my Churchill Scholarship, but it is about something that’s very important to me. I hope it’s useful!
Sharing lived experience can be a lonely game. There’s no getting away from it.
Every time you give an interview. Every time you step onto a stage. Every time you tell a colleague, or a new friend, or someone in the supermarket about your lived experience, you’re allowing those listening to have a glimpse into the darkest, most personal time in your life.
And after you dip into the dark recess that you’d much rather didn’t exist…you make your way back home or to a hotel room alone, trying to lift your way out of the place that you’ve just allowed yourself to go to… again.
I don’t think the forum matters. It can feel the same in a support group. After a while people with a crude understanding of why you might be attending the group, ask why you keep attending, long after the event? Some have likened it to picking at a scar that then starts hurting again. Well, I suppose the news is that for people like me, like us, the scar never heals. You can reopen a wound that gets better, yes, but it never heals in that true sense of not being there anymore.
It’s always there, and part of its undesirable power is that people like me can dip back into the intensity of it at a moment’s notice. Isn’t that what makes lived experience valuable? Allowing those who’ve never walked our path, seen what we’ve seen, a momentary glimpse of what we’ve felt and what we’ve learnt, from a safe distance.
After our film Life After Suicide aired on BBC 1, lots of people got in touch to offer to share their lived experience with the wider public, which was a welcome response to a film that was trying, in a small way, to address the stigma around suicide. However, I always found myself advising caution when deciding whether or not to share lived experience, because it’s something that needs some really careful consideration – something that I had to do myself when agreeing to make the documentary. What I have recently discovered is that there is actually a structured programme that can guide people through such decision making.
Yesterday, I spent a fascinating day here in Chicago with Patrick Corrigan, Distinguished Professor of Psychology at the Illinois Institute of Technology. Currently, he is principal investigator of the National Consortium for Stigma and Empowerment and his team, who specialise in stigma and discrimination experienced by people with health conditions and disabilities.
After years of research and sharing of lived experience, Patrick and his team have designed The Honest, Open and Proud (HOP) programme. The rationale behind the programme is that research shows that those who disclose aspects of their lived experience and mental health issues report a subsequent sense of personal empowerment and an increase in confidence to seek and achieve individual goals.
The HOP program is a peer-led program used to help people with mental health issues make decisions regarding the disclosure of their condition. The curriculum includes three parts —evaluating the pros and cons of disclosing in specific settings; identifying people who may be more receptive to the conversation; and crafting a disclosure story.
Using a community-based participatory research approach, the team comprises researchers, people who have attempted suicide or have family members who have attempted suicide, and people who provide suicide prevention services. They have created, developed, and tested the curriculum for the HOP program with the goal of seeing positive changes in psychiatric symptoms, relationships, quality of life, and help-seeking, especially in suicide attempt survivors.
Sitting in a Skype meeting, as an observer, with Patrick in his office in Chicago and colleagues beamed in from across the globe, I wish that everyone had a chance to do the programme and work through the potential positive and negative aspects of sharing lived experience – but I wish I’d known about it years ago! No, it wouldn’t have changed my decision to make the film, but surely taking control of that process can only be a positive thing?