Reflecting on Lived Experiences in Mental Health

This article was written by Grace Gatera and Shuranjeet Singh, two lived experience consultants in the Wellcome Trust's Mental Health team.

This article introduces the complexities within the concept of ‘lived experience’ in mental health to offer some considerations as to how we approach, reflect upon, and meaningfully practice mental health research alongside those who have lived experiences of mental health challenges. Over the last decade the term ‘lived experience’ has become increasingly popular, from academia and research to the planning and delivery of health and social care. Google Trends reports that searches for the term ‘lived experience’ have been steadily increasing since November 2009 around the world. Though the term lived experience has become increasingly present in mental health, it is important to outline that it does not denote an entirely new concept. Rather, it builds upon the work of survivor and service-user activists, as well as those who have personally experienced mental health challenges and sometimes, though not always, clinical services.  

The Wellcome Trust's Mental Health Priority Area (MHPA) operates in the context of such change with a renewed turn towards the centring of ‘lived experiences’ across the mental health landscape. As a £200 million investment into transforming how we understand, fund and address anxiety and depression in young people, the Mental Health Priority Area aims to actively and meaningfully centre young people with lived experiences of mental health challenges across its workstreams. 

To ignite this discussion, we drew upon the expertise of people (including other lived experience advisors) from the Mental Health Priority Area. This article offers our initial thinking on a vast and complex topic, and one which will be continually defined and redefined as our work continues.  

We asked them:

1. How would you define the term ‘lived experience’?
2. How did you first encounter the term ‘lived experiences’?  
3. Do you think the term ‘lived experience’ is important?

How would you define the term ‘lived experience’?  

How we understand the world around us can differ depending on social, environmental, and political contexts. It can be easy to assume that when we use the same term, we are signalling the same meaning by referring to the same ‘thing’ or process. However, it is important to appreciate the diversity of definitions within the mental health landscape to highlight how we are all bringing different thoughts to the table even when we are using words that may look and sound the same. 

Most people we spoke to said that lived experience within the context of mental health related first and foremost to a type of unique, person-centred knowledge which can help to present important, and often missing, insight within the mental health landscape. To highlight this, one person said that lived experiences are “more than our personal stories... [they are] the additional insight, wisdom and knowledge that brings”. In framing lived experiences of mental health challenges as a form of knowledge, conventionally accepted and legitimised forms of knowing must be questioned. Rather than being detached from knowledge development and formation, lived experiences of mental health challenges are placed on the same field as other forms of insight derived from academic, practical, and working experiences. It goes without saying that this equal footing is essential in mutually shaping our current and future mental health landscape. 

As well as being a form of knowledge, several people noted that someone with lived or living experiences of mental health challenges need not have received a clinical or medical diagnosis. In doing so, discussions around lived experiences of mental health challenges are unique when compared to terms such as ‘patient’ and ‘service-user’. This subtle difference indicates that identifying as having lived experiences of mental health challenges may be a viable option to a wider range of people whose help-seeking behaviours and self-identification are not tied to accessing clinical or medical supports. Such positions are reflected in research on the language of mental well-being undertaken by the National Survivor User Network which reports the term ‘person with direct or lived experience of mental distress’ as having the highest average ranking of a number of terms presented to research participants.  

As a concept, it is evident that ‘lived experience’ of mental health challenges presents a distinctive form of knowledge which builds on and subtly differs from existing terminology to engage a wider audience and range of perspectives.  

How did you first encounter the term ‘lived experiences’?  

It cannot be assumed that everyone consumes their information and develops their understandings from the same sources. By asking people about how they first came into contact with the term ‘lived experience’ we are able to develop insights about where information is accessed and how this may impact on our approaches to lived experience in theory and practice. 

There was a distinctive variety of views from everyone we spoke to, but they were largely connected through the learning of ‘lived experiences’ through mental health advocacy and academic landscapes. Within advocacy, some people first encountered ‘lived experiences’ directly from other mental health advocates, whilst others linked ‘lived experience’ to the histories of survivor-user activism. Interestingly, no people mentioned the use of the term in media, popular culture, or through generalised public conversations, which may indicate its lack of diffusion into such spaces. As such, lived experiences of mental health challenges can be considered a fairly niche term within the health, social care, and mental health spaces.  

However, ‘lived experiences’ is not a neutral term as it can also become a tool for rejecting and replacing more contextual terminology in a neo-colonialist fashion. Many people we spoke with derive their perceptions of lived experience from contexts in the Global North, which presents a potential challenge in perpetuating the projection of knowledge onto Global South contexts within mental health. For example, one person raised contention with the term lived experience and its notable lack of use within their national context as compared to settings in the Global North. In such instances we must be cautious not to impose views onto other contexts around the world. The dominance of the English language within ‘lived experience’ discussions in mental health is another example of this where non-English speaking settings can find that their ways of talking about similar topics are being excluded through the new-found use of ‘lived experience’. The rise of this particular term in mental health may inadvertently work to displace existing terminologies which are better suited to their settings whilst advocating for the same concept; projecting a way of knowing into places and spaces whilst implicitly forcing its use.

Active reflection and an openness to confront challenges are necessary if we want to ensure that lived experience, and other conceptually similar terms, work alongside instead of replacing existing knowledge systems in mental health. First and foremost, our focus should remain on centring those whose experiential knowledge has historically been excluded from the mental health landscape.  

Do you think the term ‘lived experience’ is important?

In our final question, we asked people whether they thought the term ‘lived experience’ is important. Their views provide invaluable insight into the possibilities and pitfalls of the term and the concept it signifies.  

There was a consistent view that there is potential for ‘lived experience’ to be a term which can empower both the individual person and the collective mental health landscape. One person said that this could challenge existing orthodoxy whereby people with lived or living mental distress are labelled as their diagnosis, highlighting that ‘language use does reflect our power relations, by labelling them only to their diagnosis, I am afraid we are ongoing to dehumanize them’. In doing so, individuals can have increased agency and a wider choice as to how they identify, detached from a medical diagnosis which has been projected onto them. Though important as a way of self-identification, another person outlined the potential of lived experience to transform the mental health landscape more broadly. They highlighted that its importance should be understood by professionals in mental health spaces. In understanding the importance of lived experiences, professionals will potentially be more aware of alternative perspectives as well as their biases and unconscious perpetuation of inequalities between them and the communities they serve. While acknowledging that ‘lived experience’ in mental health can be an empowering term to the individual, it is equally as important that professionals within the mental health landscape also see, recognise, and act upon this significance. Whilst being a mechanism for change at an individual level, people outlined that lived experiences have the potential to radically transform the collective mental health landscape now and into the future.  

While the term ‘lived experiences of mental health challenges’ is important, people have outlined that we should not be wedded to the word, or phrase, but rather the broader concept that it describes. The term ‘lived experiences’ is presented as one of a number of terms for the centring of those with experiential knowledge of mental health challenges within the mental health landscape. Their experiences, their knowledge, their insight and their presence is charged as fundamentally important. By talking about ‘lived experience’ we are working towards a system which centres experiential knowledge and insight in a meaningful and reflexive way. While the word may change, peoples outlined that the fight and struggle for the concept will continue. Focusing on action as opposed to rhetoric and ensuring that we can act on our words will contribute towards a landscape where those with lived experiences of mental health challenges are meaningfully centred across the mental health landscape.  

Conclusion 

To conclude, ‘lived experiences of mental health challenges’ represents an ongoing struggle for the legitimisation of particular forms of knowledge and experiences within the mental health landscape. The term builds on a legacy of user-survivor activism and hopes to work towards more equitable, responsive, and meaningful processes within mental health activism, advocacy, research, and care delivery. 

This article is the first iteration in what we hope is a series of reflections highlighting the uniqueness of what lived experiences have to offer in mental health. The journey won’t be easy, and we should be open to confronting mistakes we may make. We are all learning, and we are all itching to create a system which works best for the peoples it serves.  

The authors would like to thank all contributors for their time and efforts in sharing their thoughts as well as their ongoing work to transform mental health spaces.