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Lauren Kennedy West and her husband Robert Kennedy West started the YouTube channel Living Well with Schizophrenia four years ago, beginning with Lauren speaking openly about her personal struggles and symptoms that eventually led to being diagnosed with schizoaffective disorder in her mid-20s.
“The name of the channel kind of gets people to rethink how they think about what it means to live with an illness like schizophrenia,” Lauren said.
Some of the videos are educational, explaining what schizophrenia symptoms and treatment can look like, defining terms and answering common questions. But she also shares details about her experiences from her everyday life as a parent and partner, dealing with mental illness at the same time.
“It started with just wanting to help other people in their own journey, and wanting to be a voice that helps them feel less alone,” she says.
“But over time, the more we’ve heard back from people about how it’s helped them, and the more I’ve been able to process my own experiences through sharing vulnerably — I’ve had to process a lot in order to share on our YouTube channel — I think that both those things have helped me with my own journey of self-acceptance around the illness, and understanding my illness.”
Since the channel began, the Kennedy Wests have now started working on it full-time, and they also started up an online peer support community, with weekly groups facilitated by someone who also has schizophrenia.
That community now numbers in the hundreds, and they fundraised through the fall and winter of 2022 to add more resources.
Lauren says some of the YouTube content reflects the kind of information she was looking for when she was first trying to understand what was happening to her. She made videos on things like what to do after a diagnosis, or deciding to disclose your illness to your employer.
Lauren and Robert have also interviewed mental-health experts and made video portraits of other people who have schizophrenia, sharing what it means for their lives.
In 2019, the couple also made videos from each of their perspectives about getting emergency help when Lauren stopped taking her medication, slipped into psychosis and had to be hospitalized.
“I never really post on the YouTube channel in the midst of a psychotic episode, because that just doesn’t feel good for me, but trying to talk about it more and bring these experiences out into the open is a really important thing,” she said.
“It’s something that has really resonated with a lot of people in terms of being like, ‘I don’t feel I can say this anywhere. I’ve never heard this from anyone else, but this is something that I go through, too.’”
Lauren says it’s an important part of instilling hope in people who have experienced some of the same struggles she has, but aren’t in the kind of stable place that she’s gotten to with the help of a strong support system. And for people on the outside, she hopes the resource she and Robert have built can help foster understanding and empathy.
“People who are living with schizophrenia spectrum illnesses can lead full and meaningful lives,” she said.
“I want to convey that it is completely possible.”
Source: EdmontonJournal
