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Use of Language

The term ‘lived experience’ is employed collectively to represent the diverse experiences of people affected by trauma, mental distress, suicidality, and alcohol and other drug use etc. 

Individual experiences of the collective group are diverse and wide ranging.  Yet co-occurring issues related to trauma, mental distress, suicidality, and alcohol and other drug use etc. are relatively common.

The complexity of co-occurring issues requires a whole person approach to address.  It is equally important to recognise and respect the ‘lived experience’ of the whole person.  This is the reason lived experience of related issues including trauma, alcohol and other drug use are specifically referenced in the following definition.

The Northern Territory Lived Experience Network uses the term ‘lived experience’ to encompass:

  • People who are living with (or have lived with) issues related to trauma, mental distress, suicidality, alcohol and other drug use, etc. and
  • Family and kin who provide care and support (or have provided care and support) to a person living with (or has lived with) any of the issues named above.
 

The use of present tense reflects that for many people, their experience is ongoing.  Alternately, the use of the past tense reflects that some people have recovered, passed away, or otherwise ceased to provide care and support.

The use of the term ‘lived experience’ in relation to suicide is somewhat broader than its application relating to mental health.  Suicide lived experience encompasses people who think about suicide, people who have attempted suicide, people who care for someone with suicidal behaviour, people who are bereaved by suicide, and people who are impacted by suicide in some other way, such as a workplace incident. 

It is important to know that for many years the term ‘lived experience’ was used solely to represent the experience of people affected by suicide, and has relatively recently been expanded to include mental distress, etc. 

This has largely occurred as people move away from the term ‘consumer’ to represent people who experience mental distress and ‘carer’ to represent family members and kin providing care and support.  The gradual shift in the use of language has occurred as a growing number of people living with mental distress and their supporters express concern that the terms ‘consumer’ and ‘carer’ are not strengths-based, do not value the experience and individual capacity of people living with mental distress, or reflect the mutuality between people who experience mental distress and their family members or friends. 

The terms are also binary and imply that a person, must be either ‘consumer’ or ‘carer’, which is unhelpful for people who have lived experience as an individual affected by trauma, mental distress, suicidality, alcohol and drug use, etc. as well as experience providing care and support to a family member or friend.