Defining boundaries: navigating the challenges of working in lived experience roles.
In today’s blog, Molly Anderton, a Lived Experience Advisor at NdC, shares her experience of defining and holding boundaries within her role and how this enables her to share her passion and sense of purpose whilst protecting her own wellbeing.
For the last 2 years I have been working in various lived experience roles, utilising and reflecting on my own experience of mental health care as a late-diagnosed Autistic. My aim is to not only support service improvement, but also to increase the knowledge, understanding and ability of staff to empathise with their patients – something I found to be invaluable in enabling trusting, therapeutic relationships to form. I feel incredibly lucky to be able to say that I genuinely love my job. Whilst the power and value of lived experience insight within healthcare has been recognised for many years now, the reality is that dedicated (and paid) lived experience roles are still new and being developed in lots of areas across the country. As a newer, unique workforce we are also learning to understand and set our own boundaries at work – an important part of ensuring we stay well in a job that can demand so much of us emotionally.
Part of my role as a Lived Experience Advisor on the Culture of Care Programme includes supporting and working alongside mental health clinicians. In another setting or locality I could be their patient and yet instead, at work, we are colleagues. Although we strive for there to be no hierarchy or power dynamics between those providing and those receiving care, it is undoubtedly felt by many of us on the receiving end. Navigating a shift towards mutuality with our clinical colleagues, a working relationship rather than a therapeutic one, can, at times, be tricky. I have found myself doubting the validity of my own expertise, especially if it doesn’t align with the views of others who may be considered ‘more qualified,’ which can lead to an overstepping of my own personal boundaries. Perhaps I share aspects of my story, which under normal circumstances I choose to keep private, in response to feeling the need to ‘justify’ or ‘evidence’ my point about why certain attitudes or approaches to care can be so damaging. I also recognise that, on occasion, my Autistic experience of increased sensitivity to perceived conflict and/or rejection leads to a fawning response: rather than asserting professional boundaries I might allow myself to slip back into being viewed as ‘the patient’.
In some ways, holding my boundaries around what I am willing and able to share of myself, can be easier than setting them around what I am able to hear. Through supervision and with increasing confidence I have learnt to categorise my experiences of care. I separate those I choose to openly reflect on, or share elements of safely, from those which are kept either personal to me or shared only in the company of those I feel safest with. I prepare ahead of time for situations in which I might be asked to speak from my lived experience, enabling me to consider my response and the level of information I might want to share. Having spent time as a patient on mental health inpatient wards, surrounded constantly by great distress, hearing from others about their negative experiences is not new to me. What this doesn’t mean is that I am always in the right space psychologically or even physically to listen to, and potentially then re-live, the stories of others. There have been occasions on which hearing the distress of others, no matter how similar or dissimilar to my own, has led to overwhelm and/or shutdown, especially if I was not expecting or prepared for it. Finding the confidence to assert my boundaries around the topics and depth of conversations, in a way which is both compassionate and protective to my own wellbeing, is an ongoing area of development for me.
“Lived experience work involves navigating the fine balance of finding purpose and passion in the role, whilst also avoiding emotional overburden...”
My passion for the role arises from the fact that I not only carry my own experiences with me, but also those of close friends who have lost their lives or been harmed by the current mental health system. I also feel their pain and their suffering, carrying a sense of weight and responsibility for ensuring that real changes are made. Adding this to my ability to hyperfocus on things I am passionate about, it can be very easy to push my own boundaries around working times: I strive to achieve ‘perfection’ in the work I deliver and fear not doing something justice if this is not achieved.
It can be hard to accept that the systemic and significant changes we are trying to make to the mental health system will not happen overnight, especially when you care so deeply about ensuring they happen. Upholding emotional boundaries, separating ‘work’ from my living experience of mental health challenges, is complex and requires constant, conscious thought. Lived experience work involves navigating the fine balance of finding purpose and passion in the role, whilst also avoiding emotional overburden and protecting your ability to ‘switch off’ from the heaviness it can bring. I have found that, alongside having more ‘formal’ spaces for reflection and/or supervisions, it is often the more informal conversations with colleagues, the car journeys shared home together or the sharing of passions and interests outside of work that help me to remain grounded and feel supported in the work I do.
