As I was writing this report I got a message on my phone from one of the people who had shared their story for the report. This person understands that their life expectancy has been significantly reduced because of psychiatric drugs they were prescribed by mental health professionals, drugs that also “dampened and deadened” them for many years.
“I spent years in that state,” they wrote, “and I try really hard to not see them as wasted years, but rather as an experience I can use to help bring about change.”
If anyone has reason to be angry at the people who work in the mental health system, this person does. Yet the message left on my phone was clearly intended to remind me not to forget that those people - mental health professionals - are also people who deserve our empathy.
Recorded in a voice that wavered with intense emotion, the message conveyed to me as powerfully as any of the stories I read in the process of preparing this report, how much is at stake for many people when we talk about our mental health system.
“I went to a symposium earlier this year and we had two psychiatrists stand at the front of the room and apologise to us for their prescribing. I know that you’ve probably talked to a lot of people who have really negative feelings towards people who work in the system, and I think balance is really important.
As you can probably tell from the sound of my voice, this is really difficult subject. But that was the thing I really wanted to get into the story. That this affects a whole bunch of people, and there is a whole bunch of feelings and experiences in it, and it can’t always be one sided. You have to account for the other people as well. It’s got to be balanced. Good luck writing your report, I’m sure you are doing that right now.”
A day earlier I had written to this person asking them for more details from their story. They wrote back to remind me that I was asking for something very difficult.
“It’s pretty hard to write that nice people trying to do the right thing have contributed to my early death - talking about my reduced life expectancy is pretty hard, mine and a lot of people I care about. Argh, the whole thing is hard, awful truths that we all have to face up to.”
This email stopped me in my tracks. I’d been working on this report for weeks. Reading through the stories that were submitted, getting in touch with people who were willing to talk more, sitting with people for hours, listening and imagining myself in their stories.
Because that’s what stories allow us to do, they allow us to imagine ourselves into someone else’s life for a moment. So I’ve spent much of the past few weeks imagining myself in these stories.
As someone with my own lived experience of mental distress - in my case that distress comes with the labels ‘depression’ and ‘post-traumatic stress disorder’ - it’s not a big stretch for me to imagine myself in these stories.
Like many of the people who shared their stories for this report I have struggled to access affordable mental health support. Despite an initial assessment that suggested I could benefit from therapy, I didn’t qualify for publicly funded sessions, and couldn’t afford to pay for them myself.
So for several years I lived with the knowledge that a loud bang, or a barking dog could suddenly paralyse me. I avoided certain places, and waited until a friend could walk with me through public spaces. I lived with fear, anxiety and the constraints they placed on my life, for years until I had enough money to pay for my own therapy.
I was fortunate in that the triggers for my experience of extreme mental distress could generally - though not entirely - be avoided by ensuring I had company when walking in public places and that those people knew how to help me if I was suddenly paralysed by fear and anxiety. I was also fortunate that I had secure work and could take paid sick leave when I needed it to recover from those incidents, a process that could take several days. Many are not so lucky.
Also like many people with lived experience of mental distress who shared their stories with the People’s Review of Mental Health, I have met wonderful people working in mental health services.
So I take very seriously the heartfelt request I listened to on my answer phone as I put this report together, to remember that “this affects a whole bunch of people, and there is a whole bunch of feelings and experiences in it.”
Some people might argue that my experience makes me biased. On the other hand, I’d argue, it meant that as I read these stories - whether they came from people with experience with our mental health system as users or workers or their families - I had some sense of what it means to tell your story.
I hope that those people who contributed their stories to our People’s Review of Mental Health feel that their experiences and feelings have been treated with respect, and I hope very much that the courage and generosity of the 500 people who submitted stories to this process will be rewarded by seeing their concerns taken seriously, along with their hopes and recommendations for a better future for mental health services in New Zealand.
Marianne is the co-director of ActionStation, and the lead author of the People's Mental Health Report.