Edmonton-based schizophrenia resource grows online community worldwide

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An Edmonton couple create an online resource for people with schizophrenia and share an honest portrait of what it’s like to live with the disease.

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Lauren Kennedy West and her husband Robert Kennedy West started the Living Well with Schizophrenia YouTube channel four years ago, beginning with Lauren talking openly about her personal struggles and symptoms that ultimately led to a diagnosis of schizoaffective disorder. in his mid twenties.

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Schizoaffective disorder is a combination of schizophrenia and a mood disorder – for Lauren, it’s bipolar disorder.

Lauren, 31, is trained as a social worker, while Robert has experience with video and YouTube work. When they met, since Lauren was already talking to different groups about her mental health journey, Robert encouraged her to share more widely.

« The channel’s name is causing people to rethink the way they think about what it means to live with an illness like schizophrenia, » Lauren said.

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The channel has since attracted nearly 200,000 subscribers and recorded millions of views.

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 of her daily life experiences as a parent and partner, coping with mental illness at the same time.

« It all started with just wanting to help others on their own journey and wanting to be a voice that helps them feel less alone, » she says.

« But over time, the more we heard from people about how it had helped them, the more I was able to process my own experiences by sharing in a vulnerable way – I had to process a lot of things to share on our YouTube channel. – I think those two things have helped me on my own journey of self-acceptance around illness and understanding my illness.

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Since launching the channel, the Kennedy Wests have begun working there full-time and have also started an online peer support community, with weekly groups hosted by someone who also has schizophrenia.

This community now numbers in the hundreds, and they have been fundraising throughout the fall and winter of 2022 to add more resources.

Lauren says some of the content on YouTube reflects the kind of information she was looking for when she was first trying to figure out what was happening to her. She has made videos on things like what to do after a diagnosis or deciding whether to disclose your condition to your employer.

Lauren and Robert also interviewed mental health experts and made video portraits of others with schizophrenia, sharing what it means to their lives.

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But they also share hard times with Lauren’s illness. She talks about her past suicide attempts and the difficulty of coping with the side effects that can accompany antipsychotic medication.

In 2019, the couple also made videos of each of their perspectives on getting emergency help when Lauren went off her medication, slipped into psychosis and had to be hospitalized.

« I never really post on the YouTube channel in the middle of a psychotic episode, because it doesn’t feel good to me, but trying to talk about it more and bring those experiences out into the open is a really important thing, » she said.

« It’s something that really resonated with a lot of people in terms of ‘I don’t think I can say that anywhere’. I’ve never heard that from anyone else, but it’s something that I cross too.

Lauren says this is an important part of instilling hope in people who have gone through some of the same struggles as her, but are not in the kind of stable place she has come 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 with schizophrenia spectrum illnesses can lead full and meaningful lives,” she said.

« I want to convey that it is entirely possible. »

masmith@postmedia.com

@meksmith