Local couple turn to YouTube to share their experiences living with schizophrenia

An Edmonton couple has found YouTube success using lived experience to raise awareness around schizophrenia and help people living with a diagnosis.

Lauren Kennedy West started experiencing symptoms of schizophrenia when she was a teen, and as she got older the symptoms got worse. She struggled with years of misdiagnoses, she said, as well as delusions and hallucinations.

After living through two psychotic breaks and two attempted suicides, she was diagnosed with schizoaffective disorder in 2015. There was some relief, she said, but uncertainty and shame as well. She didn't know what the diagnosis meant for her life and didn't see a lot of hope.

"So much of what my understanding entailed about those things was through like kind of horrific depictions of it in popular media and TV and movies and whatnot. So I was scared," Lauren said.

"I turned online for other people who had that experience with the illness and just to kind of hear from people who had lived experience – but I couldn't really find much."

In 2018, Lauren and her husband, Robert Kennedy West, decided they would fill the gap. Lauren was already doing talks on the disease and he encouraged her to start posting them online to reach a larger audience.

Now, their YouTube channel, Living Well with Schizophrenia, is the couple's full-time job and saw more than 16 million views since it launched.

Schizophrenia affects 24 million people around the world, Lauren said, and the channel is there to educate, and offer support and hope. Videos include topics like medication, relationships, symptoms, self care and suicide.

"Part of why we're creating this is because I think that's a lot more people than people realize but also this general population is at risk for a lot of other issues, mainly suicide," she said, adding that 4.9 per cent of people diagnosed with schizophrenia will die by suicide and 20 per cent will attempt it.

"So, it's something that really needs to be talked about more."

The channel is meant to be a resource for other groups as well, and Robert says they've gotten positive feedback from clinicians, doctors and law enforcement and the public. For people like himself who have a friend or family member living with schizophrenia, Robert also posts videos from his perspective.

"For people who are newly diagnosed, there's kind of this period of mourning the life you could have had, and I think that sometimes that affects family members more maybe than the person who is actually diagnosed," he said.

"That's something that support people and family and friends have to keep in mind, that things might be different but that doesn't mean that it will be bad."

For now, Living Well with Schizophrenia has a YouTube channel and a Patreon, but Lauren and Robert hope to start a non-profit one day to offer more resources and services for people with schizophrenia.

"You can still lead a meaningful and full life even while navigating an illness like schizophrenia," Lauren said.

"Capacities change and what you envisioned for your life might not be how it's going to play out because of the illness or because of a multitude of other factors that just happen in life, but that doesn't mean it's going to be any lesser than."

With files from CTV News Edmonton's Alison MacKinnon