Thinking About the Term “Lived Experience”

I write about peer support but I am not a Peer Support Specialist. I am a psychologist and have spent my career working with clients to help them recover, as well as trying to change mental health services so that more clients are successful at recovery. 

That work is very personal for me.  Like the majority of clinicians, I have my own lived experience with mental illness that informs how I do my work.  This includes my own efforts to recover from depression and anxiety, which have been with me most of my life.  I first noticed them when I was in high school.  Like most people, I didn’t understand what depression or anxiety were at first.  It took me several years to recognize them for what they were, and to understand how they were undermining my schoolwork, my friendships, and my sense of self.  Looking back, I can see small and large decisions that I made about how to respond – some of which were helpful, and some of which simply made matters worse. 

Depression and anxiety led me to have experiences using treatment and peer support.  Like 80% of mental health clinicians, I have used mental health treatment for my own health and personal development.  Those experiences include working with wonderful clinicians who were instrumental in my recovery, but also working with poor clinicians who were either not skilled enough or not motivated to provide the help I needed.  I also had experiences with individual and group peer support that were negative and many that were positive and life changing. 

 When people ask me about my lived experience, I know that they want to hear about these experiences – my depression and anxiety, and my experience with treatment.  I’ve had other experiences that have had a major impact on how I feel about recovery and myself. Our conversations about “lived experience” are poorer when we don’t include these broader topics.  I’d like to propose that “lived experience” also includes life experiences that help us empathize and understand other people and to have insight about life.   For me, these include:

·        Experiences in which I heard about the suffering of other people described in a way that I recognized similarities my life.  I remember an experience early in my career when I accompanied a client to an AA meeting.  I have not had a substance use problem, but in that meeting, the open conversation I heard about people’s struggles sounded very similar to my own struggles in life.  I had one of those ‘aha’ experiences, realizing that suffering and internal struggle is a commonality across people and that it can be something that binds us together. 

 ·        Experiences in which I failed at something despite my best efforts. Failure is a common experience.  Unfortunately, it rarely gets talked about.  In our culture, failure is associated with shame and embarrassment. Like everyone, I have had many experiences of failure – small, medium and large.  Some of these were academic (school is such a common place to fail!), some were work-related, and some were social. These experiences left me feeling disappointment in myself, and with the views of others who saw my failure.  These experiences are extremely common.  Like illness, the experience of failure can be something that connects us, though more often it pushes us apart. 

·        Experiences of being on the outside of a group is another common experience that has had an impact in my life.  We all have been on the inside of groups and on the outside.  This can be family, friends, social, and professional groups.  The more we get to know ourselves for the individuals that we are, the more we recognize that we are always both similar to others and unique.  That uniqueness comes with a sense of loneliness that can be a serious burden. 

 ·        Like everyone, I’ve had experiences in which other people (individuals and organizations) have treated me in ways that leave me feeling angry, disappointed, or hurt.  This has often involved them being disrespectful or failing to do what they said they were going to do.  Sometimes it involved them acting in a way that went against what they said they cared about, showing a dishonesty or hypocrisy that left me with a lasting skepticism.  On the flip side, I’m aware that I have, at times, let others down.  Particularly in the past, I have occasionally made bad choices around how to act toward friends, family and associates.  These experiences have a painful lesson embedded in them.  People and organizations are flawed.  That realization can bind us together if we allow it. 

 The concept of ‘lived experience” is a very important one.  It draws attention to the critical contribution that personal experience makes to our own development and our ability to help others.  We often use the term too narrowly, making it less useful.  We use it at times to separate us from others – exactly the wrong use of the term.  If “lived experience” simply functions as a buzzword or a simplistic category for a specific life experience with mental illness, it will lose its power to remind everyone of the reality that we all have had painful experiences and struggles, and those experiences are key to building wisdom, to connecting with others, and to fighting the isolation and shame that suffering can propagate.