A Lived Experience
The term “lived experience” has been applied so much of late that it’s hard to remember there really is no other way to experience anything. People with “lived experiences” are considered stronger and wiser as a result, with wisdom the rest of us don’t understand.
What was originally meant by the term “lived experience”, a term that has been broadly and inappropriately applied, was to decribe those who experience episodes or symptoms of mental illness and carry a unique perspective of that illness. Those with lived experience have not learnt about the experience via a textbook or course. They impart their knowledge by sharing what it truly felt like to experience it. They carry a perspective that if combined with an academic insight should enhance the understanding and therefore determine the most valuable way to treat or alleviate distress.
Putting the pathology aside for a moment, I am currently living the experience of being a writer in Dublin. I’m surrounded by statues and monuments of famous writers and soaking up the inspiration to get words written for my fictional piece. So far it’s working a treat, and my time walking the streets and daydreaming are considered essential parts of the creative process which is rather good to know too.
Today I strolled around St Stephen’s Green, a beautiful but compact square around a lake in the heart of Dublin. It was sunny and warm before the showers hit that soaked me. I saw the pigeons perfectly positioned on tops of statues and learnt about battles that had occurred right in that park, maiming and killing people during the Easter Rebellion in April 1916. I could see the bullet holes in the stonework of the Royal College of Surgeons building. My lived experience was one of beauty but also a vicarious horror thinking about this tranquil place full of makeshift first aid stations and bodies of the injured or killed.
There is this feel in Ireland, a place of “The Troubles” that have been officially over since 1998, but still recent in people’s conversations and commentary on tourist walks. People living for decades amongst fighting and terror. People still divided by religion and belief. A real feel that there is tolerability more than peace and acceptance of disparate beliefs. A legacy of trauma in the citizens, with stories to tell of very recent times that involved war and loss.
My writing has begun in earnest and my main protagonist has “lived experience” of Post Traumatic Stress Disorder. She is surrounded by others with the same disorder, drawn to tell their stories. I’m practicing bringing out her thought processes and actions through narrative and dialogue; it’s clunky but it has begun.
Because I am widely read when it comes to treatments for PTSD I know about Francine Shapiro, said to have discovered the benefits of eye movement, desensitisation and reprocessing, which later became formalised as EMDR therapy. She was sitting in a park like St Stephen’s Green full of troubles and noticed that the distressing thoughts she was experiencing were attenuated as her eyes darted backwards and forwards, watching the pigeons in the skyline. A chance awareness of the relationship between behaviour and response that led to the development of EMDR therapy, which has helped countless people with PTSD process traumatic memories that they actively avoid, memories and images that flood their consciousness with ease at inopportune times.
EMDR therapy has seen a huge rise in popularity over the last decade. It is hard to study the effects with placebo controlled trials, but when we listen to those with lived experiences of trauma, we hear that memories that intrude to cause distress leave their mind, to become neutral memories or images that are consolidated. Clinics have appeared and are flooded with referrals, and more and more therapist train in what is called a “trauma informed” way.
Intrusive thoughts and flashbacks, characteristics of re-experiencing phenomena particular to PTSD are so intolerable and distressing that those with lived experience will often do anything to escape from them. They will self medicate, avoid anything that may trigger them to remember, or seek help from therapists skilled in trauma informed modalities such as EMDR. They often experience shame that they can’t just move on and are constantly stuck in the trauma. They can feel silly that they can’t take on well meaning advice to focus on the good things. They may feel terribly guilty that the primary trauma at the root of the intrusive thoughts and memories isn’t as bad as others. After all, they didn’t go to war, they survived a car accident that they can’t stop re-living.
When I check my Twitter feed I see that RANZCP has delivered a very strong position statement regarding the use of psilocybin and MDMA treatments for PTSD. Treatments that have been approved for use by the TGA a couple of days ago. Treatments that appear largely experimental and can only be administered by authorised psychiatrists who are members of a college who largely denounces their use. The reason is the paucity of evidence, and concerns about safety, which may well be true, but there is nothing in the detail about how to try and determine efficacy in a group of lived experience victims desperate to escape the recurring nightmare of intrusive memories. People who have been buoyed by the strong anecdotal evidence that has gathered global attention.
I wonder if the scrutiny is because the perceived treatment is a biological agent rather than a description of how to make a patient move their eyes in rhythmic sideways motions to trip the memories. The reason for the efficacy of EMDR is just as poorly understood and sounds a little bit hocus pocus, akin to eating magic mushrooms to cause a trip that cancels out the inherent trip in the mind of a person with PTSD.
People with lived experiences of PTSD have done all the grunt work, along with their advocates, to have hallucinogenic agents such as psilocybin available in Australia from July 1, 2023. In a similar fashion those with lived experiences and their advocates have made medicinal cannabis available in a controlled fashion and under the regulation of TGA. There is little direction for each group of patients and their advocactes, as well as those keen to begin prescribing these agents and monitoring their efficacy. Prescribers that have heard many stories and have seen many cases of patients crippled and distressed by symptoms, keen to find relief. In many cases the patients are more widely read and have more expertise than the clinicians regulated to treat them. Their lived experience and that of others contibutes to the body of information at a much greater level than what is contained in journal articles or textbooks. Which is more compelling and accurate remains to be seen.
I do believe that in 1916 violent images were cast on those that were there to witness the atrocities of the Easter Rebellion and many would have developed PTSD in the place where I laid down memories of the beauty. We have agents that are now regulated, and behavioural therapies that have been used for years to alleviate traumatic memories. We have some clinicians that are preoccupied by the current evidence without paying reference to those with lived experiences. Perhaps someday both camps will find a common ground, something more than tolerability, and more like an acceptance of bizarre and unfounded cures that have been medicine’s friend for centuries, and will always continue to be so.