Lived Experience

In my new role with San Mateo County, I just wrapped up teaching a five-part class called the Lived Experience Academy. The Academy is a course for people to learn how to tell their stories of lived experience for personal empowerment, community building, and local advocacy. For those unfamiliar with the term, “lived experience” refers to having first-hand experience with mental health challenges. We use the word “lived” to differentiate from mental health professionals or others who may have extensive experience of working with mental health conditions or systems of care, but have not lived through those challenges personally. This distinction is important because for most of history, and still today, people with lived experience have been stigmatized, disempowered, and told that others know what is best for them. Even after maintaining wellness and being in recovery, people with lived experience are often excluded from the workforce and discriminated against in other ways. One reason for this is because the narratives perpetuated about mental illness are often scary, violent, and overwhelmingly negative.

The Lived Experience Academy turns all of those negative concepts on their head. Here are its core values:

• Lived experience is expertise.
• Integrating people with lived experience into the workforce is a type of workforce diversity, and increasing all forms of workforce diversity is important.
• Storytelling can be empowering, healing, educational, and destigmatizing.

The Lived Experience Academy gives people space to explore their past, present, and future, and craft a story that genuinely reflects their lived experience. Many of these stories do have sad, frightening, and ugly components to them. But when we dig deeper and open our lens wider, we find there is much more. There is hope. There is strength. There is resilience. By bringing those parts to light, we can bring mental health challenges out of the shadows. Our hope at the County is that by training people to share their stories of mental health recovery, we can reduce stigma, and give people with lived experience more opportunities to use their expertise to help others.

This was a valuable and challenging learning experience for me as a facilitator, and as someone who is committed to reducing mental health stigma. I struggle with whether I identify as a person with lived experience myself. I have dealt with debilitating depression, but the most intense periods of it were relatively short and the long-term consequences relatively few. My struggles pale in comparison to what my father has experienced, and to what I hear from the community members who share their stories with me. The reason that this matters is that there can be a sense of division between us ("the ones with something to teach") and them ("the ones who need help"). I want to erase that by relating to my participants, but I don't want to be disingenuous. There's nothing worse than having someone experience 1/1000 of our struggle, yet claim to totally "get it". On the other hand, I have seen the ugliness of a brain that works against you, I have hid under the shame of it, and afterwards worked hard to get help. So maybe it's not humility that keeps me from claiming my lived experience, but internalized stigma. I am honestly not sure, but it's an idea I will explore more as I continue this work.

At the end of the day though, it is more than "enough" to be a family member, so mostly I represent myself in that category. Family members are welcomed into the Academy as well, because we have our own trauma, pain, and challenges. We need support, and a space to tell those stories too. There is a lot more that I want to share on this blog, and in the community. As I cheer others on and guide them in telling their story, I feel I must do more of it myself. It's time to bring more light to the shadows!

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A modified version of this post appears on San Mateo County's Behavioral Health & Recovery Services Blog.