This video features some highlights from the Making Sense Forums that were held by inside out & associates and VMIAC in July 2017. We were fortunate to have wonderful speakers – Daniel Fisher as our international guest, Julie Jones-Webb and Max Simensen in Sydney and Indigo Daya and John Watkins in Melbourne, and feedback confirmed that the conversations generated were validating, inspiring and enlightening in a diversity of ways for all of us present.
At inside out we have felt compelled to explore the different ways that people make sense of their own mental distress experiences/extreme states, and to think about what this might mean for better responses to distress – by individuals, services and communities.
This isn’t a new idea in the health field – there’s a whole lot of work looking at explanatory models, led initially by Arthur Kleinman and colleagues, which focusses on different cultural beliefs around an episode of illness held by the consumer/patient, the family and health care providers. This work looks at how we can be respectful and validating of beliefs that differ, and provide treatments and responses that reflect this, ultimately resulting in more helpful and effective approaches.
Essentially an individual’s beliefs about their distress will influence what they see as helpful (or unhelpful) responses… and the beliefs that providers/services/policy makers/families/ communities hold about mental distress will influence the treatments, supports and services that are offered.
In western medicine, a biological framework dominates our understandings of illness, and hence our responses… but is this actually the best approach with mental distress experiences? It probably works really well when both the service user and the service provider hold a biological explanation for distress experiences (mental ‘illnesses’) but not so well when beliefs differ, which is often. When a person experiencing mental distress has a different explanation for their distress to the biological beliefs that dominate, they are often invalidated, their beliefs ignored or marginalised, and their ‘insight’ questioned. This can cause unnecessary feelings of confusion, distress and alienation, and limit the possibility of effective supports and resources.
Narrative research shows that people explain their distress in a multitude of ways – such as childhood issues, societal problems, relationship difficulties, traumatic experiences, spiritual challenges, and cultural beliefs – and recognition and respect for these different explanations is essential within a (true) recovery paradigm:
- Recovery honours diverse ways that people make sense of their experiences;
- Recovery does not privilege one way of understanding over another;
- Recovery doesn’t reject a biological explanatory framework…but it doesn’t uphold it as the only explanatory framework.
When Kleinman and his colleagues looked at what happened when biological approaches met non-biological explanatory frames (i.e. voudou, traditional healing, shamanism) they found overwhelmingly that the people who did best drew on more than one frame e.g. Haitian voudou and western medicine. As Ethan Waters, author of Crazy Like Us, observed – ‘it’s not that one culture has it right, only that they have it different’. Recognising this could serve all of us better in mental health… and not just with people who obviously bring different cultural beliefs… perhaps we could respect all different explanatory frameworks in the same way, regardless of whether they are tied to cultural beliefs? And perhaps we could also recognise that different explanatory frames provide different tools and pathways for recovery, and that they open up possibilities for everyone.
This would represent a significant shift from the current approach which continues to pressure people with mental distress experiences to take on the dominant construction of mental ‘illness’ and pathologises them when they don’t.
Why is this important? Well, firstly it’s because in general people don’t see their distress as ‘illness’. As Jon Juredini says, ‘Sickness is unexplanatory for most suffering’. I remember a turning point for me was a woman in significant crisis saying emphatically: ‘But I’m not sick’, when the people around her were insisting on hospitalisation. She was honestly mystified. It did not make sense to her that people would understand her experiences in that way and it meant we were working against her instead of alongside her.
Secondly, the way people understand mental distress will impact their sense of control around these experiences. The assumption that people don’t have control over their mental illness (‘like diabetes’) is a problem for people with mental distress who may feel disempowered to change the difficulties in their lives, and the wider community who believe people with mental distress are not able to take control of their actions. Individuals are more likely to experience self-blame, negative self-appraisal, loss of agency, increased hopelessness and depression. Communities are more likely to respond with prejudice, desire for distance and discrimination.
Thirdly, recognising different explanations for distress opens up a world of possibilities in terms of responses. But this is not a new form of diagnosis! It’s not about deciding what are a person’s explanatory frames and determining tools and supports based on this. It’s about recognising that people rarely hold a single explanation for their distress, that people can and often do hold multiple explanations, that these change over time and that a particular explanation does not necessarily restrict someone to a particular set of responses. For example, someone might understand their experiences from as primarily paranormal but find medication helpful… along with creative pursuits, meditation and protective white light.
Lastly (but not finally, as there are, no doubt, many other reasons) making space for meaning to emerge is essential in the very human process of determining the most meaningful and useful ways to understand and identify oneself, so a person can move forward in life in a way that makes sense to them. What is the cost when we deny a person the opportunity to do this? And, conversely, what is the potential when we are enablers and supporters of this process – for ourselves and for others?