The term “lived experience,” according to AI, is “the knowledge and understanding that comes from someone’s personal experiences, including their emotions, perceptions, preferences, and goals.” Another way of putting it, the Oxford Dictionary says, is “personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people.” I recently attended a symposium on Street Medicine, and the term “lived experience” came up a lot. Typically, speakers at academic conferences are identified by the degrees or letters tailing their name (the more, the better, it seems). At the Street Medicine conference, however, the keynote speaker, as well as many others, were identified by their name, comma, “Lived Experience.”
I see the validity of lived experience in my own life. I completed medical school, which included intensive clinical rotations in both Obstetrics/Gynecology and Pediatrics. I thought I knew some things. Then, a few years later, I experienced my own pregnancies and am now raising young children. Welp, “lived experience” is teaching me much more than the textbooks.
Anyway, back to the conference. I found myself gravitating to the lectures from the folks with lived experience. One man described being caught up in the streets, drug dealing, and violence. One night, he witnessed several people he cared about get killed while he narrowly escaped. One of those other people was the ten-year-old child of his dear friend. When he survived, he vowed to seek revenge. He was filled to the brim with his rage. He ultimately ended up in jail, and when released, he solicited a ride from an elderly lady to get to a rehab house. In an ironic turn of events, he realized that the nice old lady who gave him a ride was the mother of his friend’s murderer. She told him about how she was never going to see her son again, because he would be convicted of murder – and that her other son had already died of a drug overdose. She applauded the speaker for wanting a ride to rehab. In hearing the grieving mother speak, he decided to forgive, to move on, to do better. He described, remarkably, how letting his anger go allowed him to focus on rehab and ultimately changed the trajectory of his life.
Another presenter with lived experience described their encounters with a Street Medicine team, as well as their previous exposures to the healthcare system. They had been kicked out of the Emergency Department for “drug seeking” when they actually had an epidural abscess that was not just painful, but life-threatening. It was the Street Medicine team that helped navigate this person back to the hospital. When asked, “Why did you trust the Street Med team?” They responded that what made the difference were very simple things.
“They asked me for my name and then remembered it. They looked me in the eye. They were not afraid to touch me. They treated me like a human.” Perhaps most importantly, they believed in what the patient was saying, not assuming they were drug-seeking because they were homeless.
Lessons from those with lived experience are critical. I see this as taking directions from someone who has traveled the way. These statements remain an essential reminder to me when going out on Street Medicine outreach. These lessons are so simple yet so obvious—a hint at all that can be learned outside the textbooks and classrooms through which we train our doctors.
In a time when trust has been eroding between patients and doctors, I think this dose of humility is needed. There are better ways to build trust, such as seeking to truly understand the perspectives of those we serve. Lived experience is powerful. How can you learn from it? Listen louder.
Naazia Azhar, MD
*Some details related to patient stories may be altered to protect the privacy of those we serve.