The Power of Lived Experience Experts

I was so scared that I drove directly to the police station.

Before I share why, I am sure folx are thinking: ‘This is LinkedIn, not Facebook/Instagram/TikTok’. Why share this here? Give me a chance. I promise this situation relates to my professional life.

I was heading home on a single-lane highway in a residential area, suburban homes flanking both sides of the street, where the speed limit was 30 mph. A car started tailgating mine and suddenly shot around me and cut me off. Shocked and also concerned for everyone around and future people who might be victims of this wild behavior, I took a photo of the car’s license plate. The car turned left at the next stop sign while I turned right, but a minute or so later, the same car was behind me again. Again came the tailgating with the new additions of honking and the driver cursing at me out of their window. I assume the person saw me take a picture of their license plate and was retaliating, but that’s just a hypothesis.

Once I walked in the door I immediately had a panic attack. Heart pounding. Shortness of breath. Nausea. Then the flashbacks started.

I called the police non-emergency line while trying to avoid an accident or being run off the road. I gave the dispatcher information on the car and shared how scared I was. She encouraged me to drive to and park in the police department parking lot. By this point, the car had followed me for over 4 miles. As I turned into the police station, the driver finally backed off and slowly continued on his way.

After talking to the Sheriff who kindly escorted me home to ensure I was safe, reality sunk in. Once I walked in the door I immediately had a panic attack. Heart pounding. Shortness of breath. Nausea. Then the flashbacks started. I was taken back to the time when my best friend/roommate was killed in a car accident; the time I was rear-ended and the driver angrily yelled at me calling me a ‘terrible Asian driver”; the insults and slurs that were thrown at me when I dared to ignore cat calls. I know that intellectually what had just happened was not the same as any of these prior experiences. But emotionally, cognitively, and physically I was right back in those moments overcome by fear, sadness, and anger.

What does this experience have to do with my professional life?

For one, I had two interviews an hour after this event occurred. Did I feel prepared and focused? Nope. Had I returned to emotional, cognitive, and physical stasis? Nope. Did I think I could reschedule the interview given what had just happened? Also, nope.

The second reason is how these overwhelming moments remind me of the importance of elevating the voice of those with lived experience. Yes, my skills as a psychologist are necessary to the work of helping to alleviate symptoms. But so are the skills gained through my other identity as a fellow sufferer. Those who struggle with Chronic PTSD (which is different from the colloquial definition of PTSD), like me, do not have control over the situations that trigger the overwhelm that follows. We usually cannot predict when they will occur. And, we cannot always contain our responses to stay within a tight or specific time frame.

I will never be cured. At the same time, I can engage fully in building a life and engaging in daily behaviors that are consistent with my values and goals.

No one knows this experience better than us. I am talking about PTSD but the same is true for most mental health challenges. We need to hear the voices of ‘lived experience experts’ as much as we focus on the needs and desires of buyers or payors. Throughout my years in Digital Health, I have observed that too often the interventions aren’t sufficiently focused on the long-term, meaningful healing of patients and consumers; instead, the primary focus appears to be on the immediate alleviation of symptoms in an effort to cure people and demonstrate immediate outcomes for financial gain and prestige.

I will never be cured. At the same time, I can engage fully in building a life and engaging in daily behaviors that are consistent with my values and goals. I can control how much sleep I get, my level and type of physical activity, diet, and mitigating exposure to situations that I know will trigger and amplify my PTSD from prior learnings. I can inhabit cultures and systems that are trauma-informed in their practices. I am not revolving my days around avoiding this discomfort but more on practicing distress tolerance and moving through my reactions.

Digital Health services and products must merge what we know is effective from the literature, lessons of implementation science when translating standards of care/best practices into digital environments, AND the lived day-to-day experiences of those who struggle through the mental health challenges the Digital Health organizations are trying to alleviate. Without all those elements, we are just recreating the brick-and-mortar models of mental health care on a digital platform.

Besides, who wants to build and offer a shitty digital hospital?