Lived Experience in Mental Health Care

Lived Experience in Mental Health Care

Summary:
– program talks to a person (Flit Grey) who finds it difficult contending with her childhood past – she talks to her younger self who finds it difficult to trust adults/grown-ups
– it is argues that valuing each person’s lived experience & concomitant mental distress is vital to a happier & more fulfilling life – this is also key to recovery – according to what Mike Slade (University of Nottingham) describes as a paradigm shift in the provision of mental health services
– step one of recovery is now “getting into life” (where a person is not “held back more than they need to be”), which in turn increases skills & motivation
– this represents a big shift away from clinical experience – to where a person is not told how to live their life – but rather which encourages autonomy (making choices) & agency, & which treats the client as a person rather than a set of symptoms
– people talk about a mismatch between the psychoeducation provided about a diagnosis (often cold, clinical, even “cruel”) & the lived experience of a person which – despite the diagnosis – made sense to the person at the time – the person (who was given a diagnosis of Borderline Personality Disorder) talks about being made to “feel wrong” about having those experiences
– she says the label of “borderline” was confusing to her
– she also notes that the term “personality disorder” also sounded “very mean” to her & “shaming”
– she says it made more sense to her to understand her childhood story & understand what had happened to her, rather than being labelled
– she talks about feeling ok to discuss what happened to her – being abused by a caregiver which led to pain & shame
– she talks about having traumas (feeling lonely & isolated to the point of shame) – how it is difficult to talk about shame and that even now – as an adult – it feels very shameful, let alone for a child grappling to understand what has happened
– she also talks about children protect themselves from traumas (that occur to them) in “all sorts of creative ways”, including:
– dissociation (forgetting some of those experiences)
– compartmentalise (parts of us are aware of what is happening & parts of us are off in another place [this made it difficult for her – to remember specific details of what had happened to her] – & this is particularly the case for children with difficult childhoods
– she notes that the above “cutting-off of experience” are self-protective
– she says that when she was in mental health ward & saw a girl of similar age to her (at the time of the trauma), she suddenly felt cold sand (when a child herself, but only in one foot) & had a massive trauma response – & she began to self-harm, had suicidal thoughts
– she talks about having little parts of herself (she has young children inside – Max – who is an 8 year old girl inside her)
– she talks about the “Hearing Voices Movement” & dissociated parts in an individual who has been traumatised
– she also talks about the work of UK psychologist, Rufus May – who says we all have inner voices, & that we need to listen to these voices/these parts of ourself more – for e.g.:
– a voice that says you always do this – that is so typical of you
[she notes that these voices occur on a continuum]
– she notes also that she has “a deep relationship with suicide” – she says this is sometimes a euphemism for saying that she still has such feelings; she notes that such feelings are not the same as suicidal actions;
– she says suicidal thoughts can be a habitual response – as a way of escaping difficult/ painful situations – she says it “makes sense” that as a child “a part of you wants to escape”
– she says that there is always “meaning”, that there is something she is “trying to escape” when she has such thoughts/feeling, or that something is painful, or that she “feels trapped” in some way
– she says she has learned “to listen” to such thoughts/feelings – she notes also that she almost always needs support at such times, because “a part” of her believes “what the thoughts are saying” to her – she notes that there are “other parts” that do no want to die/that can see the bigger perspective
– recovery follows a CHIME Model –
C – connectedness (family, spirituality, faith)
H – hope (any sense that life holds the possibility of being better – now or in the future)
I – identity (beyond being a patient)
M – meaning
E – empowerment

– CHIME is what people told Mike Slade in his literature review that were important to them
– he also notes people often do not talk about getting rid of symptoms – people he notes are not born to be symptom-free, but rather to be interesting, “damaged” (from experience), unique

Flit Grey talks about people diagnosed with BPD were often stigmatised & made to feel pessimistic about their future as a result of their interaction with mental health services
– she says recovery & fulfilling lives is possible
– symptom alleviation & a limited form of life is not appealing to her

Flit also says – “there is a lot of fear in mental health”
– people are genuinely frightened about a person’s life getting worse &/or a person ending their life
– saying/doing the wrong thing
– getting into trouble
– she talks about the need for practitioners and patients “sitting with the uncertainties (& discomfort) together” – she refers to an open dialogue & bringing in many voices
– the discomfort is where the learning is

Michael Slade says mental health systems need to fix society & not just people when societal issues are at play – for e.g. stigma & discrimination – then there is a role for mental health practitioners – through human rights/social justice advocacy – to develop societies “friendly to difference” is in all our interests – all of us have a place & none of us need to hide aspects of ourselves to have a place
He also talks about:
– trauma – people who have earlier adverse events (sexual, physical, emotional) in childhood are more likely to develop psychosis and schizophrenia later in life & says that it is broadly equivalent to the risk of smoking and developing lung cancer
– his belief that in the future the approach to mental health will be about Wellbeing & how to achieve it & what makes life meaningful
– this will entail a fundamental shift away from what the clinician thinks should happen towards what the consumer thinks should happen

Source: AITM ABC RN | podcast date: 5 Nov 17

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