When you’re experiencing mental health issues, finding someone to talk to about it is key. Graham Panther tells the story of his own journey through the mental health system – and why he’s started a uniquely welcoming, no-questions-asked support group, The Big Feels Club.
Not long after my 23rd birthday, my life fell apart – for no particular reason.
I woke up one morning like any other, and I didn’t exist anymore. The world was there, but I wasn’t. As my eyes adjusted to the morning light of my girlfriend’s bedroom, I had a strong sensation that something at the centre of my being had disappeared, that everything had changed in some Very Important Way. I couldn’t shake this feeling for weeks. The abstract nature of the problem only made it more urgent, and totally bewildering.
Imagine trying to explain this to your friends and family – particularly when, thanks to a cultural heritage of Kiwi understatement, you present as completely fine and normal.
Me: “Mum, the thing is, I’m pretty sure I don’t exist anymore.”
Mum: “You might just be hungry? I’ll make you some lunch.”
Helpfully, there were other symptoms that drew a little more attention. The episodic breaks from reality, in particular. Moments when time and space would cease to exist, sometimes for hours on end. And waves of immense terror.
As the months ticked on, there were many things I couldn’t do the way I used to. Each day one more thing was now outside my rapidly shrinking comfort zone. Going to the supermarket. Driving above 80kph. Driving anywhere at all. These all filled me with anxiety, not to mention worry about what would happen if I had another episode while doing them. And worst of all, I had no idea why any of this was happening in the first place.
This was ten years ago. It was the most profound, life-changing period of my life, and also turned out to be first-hand research for my future career. I now work in mental health, trying to help others make sense of their big, bewildering experiences. For the past six years, I’ve consulted to government on policy and system design in NZ and Australia, drawing on my own messy life experiences the whole way through.
It’s challenging work – with its share of wins and frustrations – but I recently had an uncomfortable realisation. Of all the great services I’ve been lucky enough to help build, I myself wouldn’t go to a single one if I needed help again.
Holy shit. Why is that?
It’s because even in the most welcoming, friendly services there’s still an unspoken cost to getting help. I’m not talking about money. I’m talking about the cost to your sense of self.
Here’s the thing, we still make people feel like shit for feeling like shit. And that’s not just stigma, it’s the whole way that we think about this stuff as a society. It’s all about what’s wrong with people.
I’ve picked up a few diagnoses in my time, and tried a lot of treatments. Some helped, some made things a lot worse. The mental health system didn’t just ask me to swallow a pill. It asked me to swallow a whole way of seeing myself: as a problem to be fixed.
The language of mental health is all about deficits, disorder. Getting anywhere in the system means taking on that language. But taking on that language can make it hard to hear yourself think, or to see yourself as more than a set of symptoms. And all that can leave you feeling really, really stuck.
As an example of how this plays out, walk in the door of almost any service; before you can access any real help, you have to answer a confronting question: “What’s wrong with you?” What this means in practice is usually an assessment, often an onerous process to prove your eligibility. One service user memorably described this to me as “opening the Pandora’s Box of all the things that have gone wrong in your life” – then having to do it all again with each new service you try to access. Not all services do this, but for the most part any service is only available to people who have first gone through that mainstream process and gotten a diagnosis – either because you need a referral, or because there’s literally no other way you could find out about the other service options.
To be fair, I’m meeting more and more mental health workers who question the importance of diagnosis, who approach those initial assessments with a great degree of nuance. But this doesn’t change the fundamental emphasis on deficits. There’s a lot of compassion in this system, and a will to do better. It’s just so hard to change things.
Mental health workers have a tough gig after all. You go to them at your absolute worst, desperate for something they almost definitely can’t give you: answers. Answers to the biggest questions our little minds can dream up. What do these experiences mean? And why are they happening to me?
So what did help me climb out of that great, big hole I found myself in at 23? What changed my life wasn’t getting a diagnosis, or finding any answers really. It was finding other people asking the very same questions. It was finding my tribe.
When I was freaking out about having fried my brain – when my psychiatrist casually suggested I had “brain damage, probably irreversible” – I had no idea there were other people out there with similar experiences. I certainly had no idea you could go through these things and come out stronger.
About a year after that first breakdown, after tearing my hair out and contemplating my own death more than once, I started working as a peer support worker, at a mental health agency staffed and owned exclusively by people with their own experiences of crisis and distress. It was the single most nourishing place to have an ongoing nervous breakdown – surrounded by others who simply got it, people who weren’t fixed but weren’t fucked either. To this day, fellow travellers remain my main lifeline when things get hard again.
In the past decade, peer support services (where the staff are people who are employed because they have used services) have steadily grown in NZ and around the world. They’re now an established part of the workforce, with an emerging evidence base showing they’re cheaper and at least as effective as mainstream mental health support. Yet this life-changing resource remains largely hidden, gate-kept. In most instances, you can access peer support only once you’ve first tried all the more expensive offerings – the psychiatrist, the nurse. Only once you’ve been thoroughly introduced to that idea that there’s something wrong with you.
New Zealand actually has some interesting experiments looking to change this – for instance, programmes in select areas where you can access peer support via your GP. In South Auckland, in the alcohol and drug sector (pioneers of peer support via Alcoholics Anonymous), you can access peer support directly without going through any other services. But these remain the exceptions to the norm.
What many people don’t realise is there isn’t just one way of talking about crisis and distress. There’s certainly one dominant way: the diagnostic model, in which doctor knows best. But there are a hundred other ways of making sense of bewildering, distressing experiences. Existential therapy, Intentional Peer Support, humanistic psychology, you name it. Many of them are much more optimistic about the value of human distress as part of a good life. I didn’t know about any of these for years, and I didn’t learn about them from the mental health system, I learned about them from other people going through it.
That’s why I want to make it much easier for people to find their tribe. I want people to have access to more ways of thinking about their big, uncomfortable feelings, so they can find what works for them. I want to create a resource that I’d actually want to use!
So, drum roll, here’s what we’ve been working on. Entering the world on shaky little legs, with a few little bets on the go: The Big Feels Club.
This is only one part of a complicated puzzle, but we’re excited about where it could go. Right now it’s mostly online – in your inbox, in fact. If you sign up for our newsletter at the link below, you’ll get a fortnightly dose of new ways to think about about feelings, crisis and distress.
We’re planning real life events across NZ and Australia from early next year. Some will be in pubs and libraries, some will be in people’s living rooms. They’ll be places you can meet fellow travellers, and dive into the existential goo together.
Our big aim is to contribute to a society in which crisis and distress are seen as opportunities for connection and growth. Where you don’t have to ask for help, because exploring your messy, scary feelings isn’t seen as something people only do when they’re desperate.
There’s no eligibility criteria, you just have to want to join. If any of this sounds like you, and you want to stay in the loop, sign up here.
Graham Panther consults to government and not-for-profits on mental health service design, in New Zealand and Australia. He is co-founder of the Big Feels Club. Find him on Twitter here.
The Society section is sponsored by AUT. As a contemporary university we’re focused on providing exceptional learning experiences, developing impactful research and forging strong industry partnerships. Start your university journey with us today.
The Bulletin is The Spinoff’s acclaimed, free daily curated digest of all the most important stories from around New Zealand delivered directly to your inbox each morning.