How We Talk About “Lived Experience” (Part 2)
The term “lived experience” is used in different ways for different purposes. Like all terms, it can be helpful or it can be used in ways that create problems. When it is not clear what someone is referring to, or when the term is used to divide people, we need to take corrective action.
Defined formally, “lived experience” refers to personal, first-hand knowledge of a life event, condition, or situation, rather than knowledge gained through books, training, or observation.
When used in the Peer Support world, it often refers to the experience of having an illness and possibly the experience with treatment for that illness. It may also refer to the experience of recovery from that illness, which may or may not involve treatment.
The definition above suggests that it also refers to broader life experiences that are common across everyone. These are experiences that involve suffering. They lower our confidence and sense of worth. They create distance in our relationships. These experiences commonly involve:
· Failure – social failure, skill-based failures, professional failures, academic failures
· Experiences of isolation and loneliness
· Being hurt or betrayed by others, including individuals, groups and institutions
· Being disillusioned with yourself, other people, organizations or assumptions about life
· Existential experiences that create feelings of mortality, vulnerability, disability
· Live events, including marriage, divorce, child birth, death, loss, getting fired, losing a valued relationship, etc.
· Conditions, such as being ill, being injured, being disabled
· Situations including being victimized, victimizing others, being criticized, being praised, being publicly embarrassed or shamed, being publicly praised
Unhelpful ways that I have seen the term “lived experience” used:
1. As a Criteria for Who is Helpful and Who can be Trusted. I’ve seen Peers and others use the term in a way to suggest that people with lived experience of an illness can be trusted to understand and be helpful. People who do not, and particularly, clinicians who do not, cannot be trusted to understand and are not likely to be helpful. In this framework, lived experience competes with formal education, and is seen as “better” than education.
Research suggests that this simplistic understanding is not consistent with reality. Researchers have found that peer support, including discussions of shared lived experience, are helpful in promoting recovery. They have also found that clinical services provided by people relying on their formal education are also helpful in promoting recovery. Most importantly, the initial research evidence suggests that when peer support is combined with formal services, recovery rates are significantly higher than the success rates of either approach alone.
2. As a Marker for Political Correctness. Clinicians and other professional staff are facing requests to identify and publicize their lived experience for their clients. The implication is that if they have no lived experience, people will not, and should not trust them. Again, this reflects simplistic, black and white thinking. Peers and others have suggested that only lived experience is an acceptable authority for guiding decisions. This stance is related to those voices in the community that argue that all psychiatric medication is bad for people or all work with clinicians is to be avoided. The available data suggest that this political correctness undermines people’s recovery, causes more suffering, and eventually undermines the credibility of those making these claims.
3. As a Way to Persuade Others to Listen to Me, to Follow My Direction or to See Me as Important or Special. We as people are amazingly insecure. Whether it is obvious or subtle --- we are constantly looking for ways to reassure ourselves that we have significance. I have seen many people use the term lived experience as a means of persuading other people that they are important – that others should listen to them and follow their advice. It can be a way to set ourselves apart and above others. This use ignores the reality that lived experience, whether it is with mental illness or other forms of suffering, is universal – everyone has suffering in their life. Lived experience can connect us with others in a way that acknowledges and respects the suffering that we all experience.
Lived experience provides no authority over others and is not a justification for others to listen or not to listen to me. Authority and the right to influence others is something we earn by proving that we have listened to others and that we can actually be helpful. I’ve met plenty of people with ‘lived experience’ whose advice I would never follow and who have not earned the right to influence others.
4. As a Way to Avoid Treatment. Mental illnesses often involve symptoms that discourage us from seeking help. Whether it is depression, anxiety, PTSD, or others, part of the illness pushes us away from seeking help. I’ve seen Peers use the term ‘lived experience’ as part of the argument for avoiding seeking help that they need. They talk about not trusting and not talking with clinicians because they don’t have lived experience. First of all, they don’t know that. Clinicians are typically trained not to talk about their lived experience except in specific situations. Surveys suggest that most clinicians have lived experience with illness and treatment and all clinicians have lived experience with suffering. When I connect the dots it appears clear to me that these Peers are using the term ‘lived experience’ as part of their own avoidance.
The concept of ‘lived experience’ is now used widely in clinical and non-clinical settings. Clinicians and the public are more aware of the great value of personal experience in providing the knowledge we all need to be helpful to others. We need to watch for the ways that our own simplistic or sloppy thinking, or our own anxieties, can lead us to misuse this important term in a way that undermines our discussion, our own recovery, and the value of peer support to our community.