Does lived experience really inform our duty of care in mental health?
It is very hard to describe and express mental ill-health to people who are fortunate enough to have never experienced it.
I am someone with lived experience of mental ill-health and am someone who has worked as a mental health professional for five years with young people living with various mental health disorders. Yet, despite both my personal and professional experience, I was ill-prepared for the pressures of the pandemic and the effects it had on the young people I worked with, my colleagues, and most importantly on me.
I ignored my increasingly persistent symptoms in the name of resilience until eventually…
I was overwhelmed. I broke down completely — and then, of course, I quit.
There is so much value in bringing lived experience to a job within mental health, as it is grounded in evidence that lived experience in mental health is important for delivering an informed approach to mental healthcare.
However, as much as my lived experience helped me excel in my role by aiding me with building quick rapport and trust with the young people I worked with, there was also a downside to this. Namely, how selfish it had made me in my duty of care towards them. I was still reckoning with a lot of my distrust for the mental health system and I did not realise how difficult making the transition of being a mental health patient myself to them being a provider would be.
I spent most of my time working ‘hands on’ with young people, ensuring they were adhering to their care plans and by tending to their emotional and mental needs as and when they needed. Having been sectioned myself (compulsory admission to hospital under the Mental Health Act 1983), I naively went into this role thinking I had an advantage over most of my colleagues because I thought I really ‘got’ these young people.
Whilst I didn’t explicitly disclose my lived experiences with mental ill-health or my time as an inpatient with my patients for obvious reasons, I think they knew who had that sort of background. It is a kind of implicit knowing — on some level in the relationship they know that you have been there and done it and that you just understand. It just showed in our interactions. I felt I had always done my part in giving them a space to just express themselves, instead of explaining every little thing.
In my mind, I felt like I knew what they were thinking and exactly how they were feeling and so, at times, I feel I was quite arrogant in my approach with them. Instead of listening to them, I often found myself projecting my own feelings and thoughts to the situations and contexts they found themselves in, as I saw a lot of myself in them.
A lot of the role did not meet my expectations. I was working within the confines of funding pressures, which was at odds with my own personal commitment to these young people and their mental health. The need to fulfil this purpose meant that I was always stressed and left feeling unfulfilled. I often felt that I bent myself backwards exhausting myself by trying to make a broken system work.
One of the hardest things about working in a mental health setting is that there is a widespread assumption that as health professionals in the sector, we are hardened by our work and therefore less susceptible to the trauma from the things we deal with.
This isn’t entirely true.
Whilst it is true that I did feel desensitised to an extent, it didn’t remove the reality of the emotionally difficult work we had to do. There were so many times I would go back home and just cry. I’m glad I still allowed myself to feel these things because I feel like a complete desensitised approach would have been an unrealistic expectation and could have potentially meant the care I provided to these young people was less compassionate and engaging.
For me, this is where the emphasis on having “lived experience” stops being a framework we should be working under. It’s clearly not the case that we only learn from direct experience. It was helpful for me to evolve in my role as a mental health professional by working with people from different backgrounds and experiences. That blend of skillset — having a mix of people with both lived experience and without it — offered a lot more to our young people than imagined. Mental healthcare sometimes needs to be driven by nuance and contextualisation instead of emotion, which is what I needed to learn.
But I think for me it was vital to establish boundaries, such as when it was appropriate to relate my own experiences to the young people and when wasn’t. Over the five years, I learnt that if I was to disclose my experiences to the young people, it needs to benefit the young people — because ultimately it was about them and not me. Even if I did have similar experiences, I could never assume how the young people perceived my experience and what they felt hearing about them; my experiences could have been a triggering rather than a bonding moment.
There is nothing wrong with us as professionals, using our individual lived experiences in our practical approach to mental healthcare. However, there is no such single lived experience. I learnt this the hard way; my individual experience was not representative of everyone with mental ill-health.
Lived experiences are profoundly subjective and can make us susceptible to biases that may distort how we observe and perceive the social world, which could ultimately influence the most important thing we have set out to achieve as mental health professionals — our duty of care.
Header image source: Children & Young People Now