• Beth Perdue

'Lived experience' getting the value it deserves from mental health professionals

When we started Wellness Wednesdays last fall, the organizers behind the show recommended several individuals in the community who would make great guests for the internet talk show. These were usually Southcoast caregivers and professionals who had experienced their own mental health challenges and used that knowledge to better help others with similar concerns.


Our thinking was that by bravely sharing their personal stories along with what they had learned along the way, they would give others hope and encourage them to seek help. At the very least, they would clearly communicate that none of us are alone with our mental health challenges.


As the one interviewing these guests, it was fascinating to me to see how each guest’s unique personal struggles and resiliency both informed the work they were doing and gave them a deeper understanding of the struggles of the people they were helping.


If you work with people who are homeless and you've been homeless, for example, you know that being homeless doesn't define you or them. You see the person, not the illness or state of being homeless.


At its core, this perspective that those with lived mental health experience bring to the conversation is about taking mental health and moving it from a strictly medical diagnosis to a place that recognizes a full human being and all that that means.


It recognizes that we are complex beings with strengths and weaknesses that can’t be contained in the medical boxes we are sometimes put into, no matter how well-meaning or helpful those labels can be in facilitating treatment.


It's a significant shift in thinking, one that reflects a different understanding of mental health as belonging to all of us, not just those who receive diagnoses.


Vikram Patel, professor of global health at Harvard's Medical School, emphasized the power of lived experience when talking to Prince Harry and Oprah on "The Me You Can't See" series opening episode. Patel was talking about how we can tap a community’s human resources - especially those with lived experience - to deliver better care and change the narrative around mental health.


"First of all, we can use widely available community-based human resources to deliver frontline mental health care," he said. "Second of all, that the most effective mental health care programs involve active participation of the community, particularly persons with the lived experience."


Also in the episode was Shaun Robinson, Chief Executive, Mental Health Foundation of New Zealand, and Pat Deegan, a clinical psychologist, two individuals with lived experience of mental illness who are also mental health professionals. Their words about humanizing mental health were some of the most hopeful and empowering in the episode.


"It's not about sickness," Robinson said. "It's about being a human being. It's about living your life, what happens to you, and how you make meaning of what happens to you and what support you get.


"So if we start acknowledging that we all have mental health, sometimes it can be a real asset, and we can all build that asset just like we can build our physical fitness. (And) sometimes it can be really challenging and I think if we start from that perspective, of that's what mental health is about, then, you know, we design a system around that.


"But the diagnostic system and the whole system that says, "It's an illness, you might catch it," just feeds into the notion of stigma as something we're frightened of and we don't know how to get help."


Deegan took the idea even further, speaking about schizophrenia, a diagnosis she was given as a teenager.


"It's possible to live our lives, not our diagnosis," she told Oprah. "And that the number one thing we need to always remember when you're working with folks with (the schizophrenic) diagnosis is that an illness can't recover, but a person can.


"I am not a schizophrenic. I have never been a schizophrenic. I am a person, not an illness. And if we can avoid that fundamental error of conflating a diagnostic category with my personhood, we're already in the process of humanizing behavioral health."


If you have AppleTV, you can check out all six episodes of the series, or watch the first episode for free.


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