Lived experience refers to someone who has a personal experience of something, often bereavement, mental health challenges or challenges with addiction. Although not always the case it’s generally considered to be a positive, that someone with lived experience is better able to connect with others going through something similar. Peer support is essentially the act of connecting over shared experience and helping one another. You would therefore think that talking about lived experience can only be a good thing but over the past couple of years I have found this to be circumstantial.
When I set up this blog I was still very unwell and my Bipolar dictated everything iI did; my lack of paid employment, struggles to hold down a solid relationship and an inability to socialise like a regular human being. When I met someone for the first time I was quick to share my lived experience because I felt I needed to justify all of the above. I had graduated from a top University and in theory should have been embarking on some kind of successful career, walking to work in trainers like Working Girl and eating buddha bowls for lunch. Instead I was living at home, watching a lot of Fraiser and just trying to get through the day. The fact that most conversations start with ‘what do you do?’ made socialising with new people draining and I only ever came away feeling worse about myself.
Even once I began to upgrade some of my life; moving out into a small flat down the road, picking up some volunteering and aiming for a 70% turn up to meeting friends, I still felt behind. My lived experience still dictated a lot of these things and although I had enhanced my response to ‘what do you do?’ it still didn’t feel like enough. My friends were becoming Teachers, working for the Civil Service and developing careers that required them to climb metaphorical ladders. They went out clubbing, for after work drinks and to yoga classes and I was going for swims alongside the over 60s at 10am. I couldn’t relate to my friends although I desperately wanted to and I felt so much more alone and inadequate. I couldn’t imagine ever working and I wanted to work. People would argue that I went for walks, painted and swam, that I did do things, they just weren’t the norm for a 24 year old. I loved these activities and continue to do them now but I was spending the majority of my day alone. I was living a retired lifestyle whilst my friends worked all day. I instead drank a lot of tea in the pool cafe with ladies who had finished aqua aerobics. So I had to tell people about my lived experience because I was embarrassed about the life I was living.
Someone who worked as a Peer Worker once told me they felt they had shared their story less and less the more well they had become because it became increasingly irrelevant to the choices they made. Since starting work and feeling I have something to say for myself there has been a shift from a boundaried but therapeutic sharing to one which is largely educational and about holding hope for those suffering. My lived experience isn’t shared to justify my lifestyle but to celebrate the hard work that has been involved in getting to this point. I want to encourage others to feel more comfortable sharing their experiences but also educate those who don’t have lived experience. This isn’t their fault, they simply don’t know, and we have created an aura of mystique around mental health that means it is harder to ask questions.
We might be curious about why someone might feel suicidal or want to harm themselves, we might want to know what it feels like to see or hear things and what taking medication is like. But we have brushed these kinds of topics under the carpet and instead focused on the more palatable wellbeing topics like anxiety, insomnia and depression. These are still important themes but we need to build on the openness they have created and embrace the opportunity to address some of the diagnosis like Bipolar, Borderline Personality Disorder and schizophrenia. These are still loaded with misconceptions and inaccuracies. For those with lived experience who are comfortable sharing their story now is the time to embrace the opportunity to share these experiences in a safer landscape and make a real difference.
These days my lived experience is also an opportunity to encourage hope, I have been extremely unwell, and not for a short bout or a blip but for a sustained period of several years. I have had significant psychiatric input and have been unemployed for the duration. But here I am, incredibly grateful for the the things I have and have worked hard for. I am in a job I love that I probably would not have stumbled into had it not been for my lived experience, I have a lovely flat, a stable relationship, and amazing friends and family. Lots of people have these things but the battle I’ve undertaken to grab them makes them all the more meaningful. My very existence is testament to the possibility that you can come out of the darkest times, bruised and not without ongoing maintenance, but here and well all the same.
For those who have lived experience and are comfortable sharing we should do so. This is harder in different settings; we all know someone who opened up at work only to find they were treated differently or was hung up on in an interview when they revealed their challenges (o yeah, true story). We also know of people whose new relationships were ended when they revealed their diagnosis or whose friends stepped back when they told them they were struggling. But without information these kinds of situations will continue. If your friend, partner or workplace are educated in what it means to have lived experience and the value it brings hopefully we can change the conversation.
For those without lived experience there are things you too can do to make a change. Create a safe space for someone to share, ask questions if appropriate or do some research (Mind are a great resource). Not having lived experience is one thing but choosing not to learn is another. Now is the perfect time to do this, it’s Mental Health Awareness Week and we are largely sat at home in pjs, you literally have nothing else to do. So lets really embrace Mental Health Awareness week and change the conversation to one of hope and learning.