Following World Mental Health Day, I have been reflecting on this year’s theme – ‘Lived experiences heard: real voices, real change’ and what it is that makes lived experience so valuable in the delivery of Individual Placement and Support.

Lived experience is often talked about here in IPS Grow and, in many services, is hugely valued. We put it in adverts and job descriptions as ‘desirable’, but how often do we reflect on what its value really is and why?

Most people working in IPS want to help other people – it’s why we are drawn to the work and what a fantastic role it is to be able to bridge people from worklessness to a life with meaning and belonging through work. Empathy and the ability to see the world from someone else’s perspective and support them through a hard time is the ‘bread and butter’ of IPS work. IPS professionals care about the work they do and are proud to be part of the best solution there is for so many people stuck in a difficult stage of their lives. So, what is it that lived experience really adds to the mix?
Lived experience is gaining insight by living through an experience rather than just reading about it and sympathising. In relation to IPS, they have witnessed and experienced, first-hand, the impact of a severe mental health condition or drug and alcohol use on their own lives or the lives of people they love.

What does that do?

It strengthens empathy and, yes, it motivates people to give back and help others as they have been helped, but it can also light a fire in your belly about injustices and the importance of giving a voice to the unheard in a visceral way.

Perhaps sharing my journey will help explain.

When I had a depressive breakdown in 2004, I was in denial. It didn’t present as I had predicted, looking from the outside in. I wasn’t in a heap crying all of the time. I was more agitated, irritable, and anxious. I thought I just needed a few days off to get my equilibrium back, but those 2 weeks turned into nearly 2 years. In that time, I was imbued with all of the worldviews about what that means. All the media images or words about what mental illness is. All the judgment about those with hidden conditions. Despite working all my life and gaining a good education, I suddenly found myself ‘on the other side’.

I found myself in a supermarket trying to decide between one meal and another – easy, you would think, right? No. I was there for a good hour before giving up on trying to make my poor brain operate in any way like it used to.

On a bad day, I really wanted to be useful again and would sit and think, ‘Now what should I do today?’ then I would ponder the options… then I would realise that I hadn’t moved for about an hour and would think, ‘Now I really must decide what to do with my day’… another hour of consideration. In short, a day of not moving at all – what I call mental paralysis. Not from lack of motivation, but from a total inability to make a decision.

Living through a depressive episode sometimes felt like living life looking through a frosted pane of glass – knowing that all of life is out there but being disconnected and unable to reach it. Depression created ever-decreasing circles of experience so that the world became my house, then a room, then a chair, then the self-echoing existence of just being inside my own head.

A particular low point was when I became invisible. One day, a well-meaning health care worker came to my house and asked, “How are you today?” I replied, “Not good at all”. She replied, “Well, that’s good” (breezily as she walked past me into my house). I had never felt so inconsequential, so ‘nothing’, so worthless. Yes, she might have misheard me, but I didn’t even have the energy to correct her and she didn’t notice. I was a non-person. Vibrant, fun-loving, sociable Julia, with a ‘flip-top’ laugh and a love of cats, art, drama, and singing, was no more.

I was lucky enough to be in a part of the UK that already had IPS and I recall seeing the huge colourful posters that promised a different future – a way back to being ‘me’!

When the psychiatrist asked me about work, I felt seen. I was scared, but it felt like someone was noticing me again. His asking that question made me feel worthy again, like any other person who works – such a normal thing to do. I got help to make a healthier decision in my life – I couldn’t return to what I did before; I didn’t want to, but I found a new place to be and a value in my work as I had never had before.

That gave me the ability to imagine more vividly how others felt when they received their diagnoses, to wonder who they really are and what matters to them, and to see that we are all just people trying to figure it out. Understanding the injustices that people can experience when they are unwell and the inhuman experiences that can be a part of illness lights a drive to want to make the world see the value in people discarded or forgotten.

Back then, I didn’t always get it right and hadn’t fully put all of the pieces together that are the IPS fidelity jigsaw, but I am still on that mission to help people get back to their lives or to find their life after years of being separated from it by a system that is clunky and imperfect and sometimes forgets that people need hope and opportunities to contribute again. I now try to do that through others by training and developing messaging and ways to help other IPS professionals see the power and huge opportunity they have to make a difference.

Every one of us needs a champion at some point in our lives; every one of us needs someone in our corner through difficult times. People who have been there know that, and they have an instinct and a fight in them to do more. Those with lived experience are also able to help others who haven’t had that experience do more, understand more and encourage them to bring more their true empathic whole selves to their work. In a world that often functions and turns according to the needs of the well rather than making living possible again for the unwell, we can all help make space for those who ‘get it’ and learn from them how to best help people to stand again. Just the very fact that we survived whatever we have experienced is so important and so valuable to those who have lost sight of their possibilities.