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This is what schizophrenia feels like: Places for People launches awareness campaign

An illustration of what it feels like to experience schizophrenia.
Susannah Lohr | St. Louis Public Radio

About 80 people, clustered around tables, bent their heads and waited for the voices to start.

“Don’t answer,” a woman’s voice warned as a phone rang. “They’ll know who you are.”

The crowd was listening to a soundscape, a six minute audio compilation called “Mindstorm,” created by a pharmaceutical company as a way to replicate the auditory hallucinations sometimes experienced by people with schizophrenia. The company, Janssen Pharmaceuticals, manufactures medication for the illness.

The listening event kicked off a new awareness campaign called #HearOurVoices, organized by St. Louis mental health provider Places for People. Advocates pressed attendees to share the recording with friends, family and social media followers, with the hope of demystifying an illness so frequently misrepresented in popular culture.

“My hairs were kind of on end. It was very hard to focus, and disturbing at times.” said Nealya Bell, a nurse at Affinia Healthcare who attended the event and tweets @nealyabell.  

Nealya Bell, who works as a nurse at a community health center, chats with Places for People executive director Joe Yancey after the presentation.
Durrie Bouscaren | St. Louis Public Radio

“I think it’s good to have insight on what people might be experiencing, and what real life could be like without treatment,” Bell said.

Campaign organizers at Places for People say they hope sharing the recording will help people get a taste of what it’s like to live with schizophrenia every day.

Mindstorm is full of voices, some threatening, others pleading for help. I listened to it in my headphones while making a cup of coffee, and a voice warned me not to drink it — it’s poisonous. As the line between reality and the voices in your head starts to blur, acting like everything is normal is the hardest part. Carrying on a conversation with one coworker was hard enough, and when another joined the conversation, I had to leave the room.

I called Joanie Milligan, who lives in Rock Hill. She experienced auditory hallucinations for the first time when she was 14. She said what I described is pretty much what a severe episode feels like.

“For me, it reminds me of standing in a hallway, with one TV on one side another TV on the other side, and they’re both going at once,” Milligan said. “It’s very scary because you don’t know truth from fiction. You can’t really trust yourself with what’s going on around you.”

Milligan’s symptoms began during her freshman year of high school. Neither she nor her mother realized that the voices she heard were abnormal, so it took six years before she was able to see a psychiatrist.  

“I’m sure what I’m saying isn’t earth-shaking, but [parents] should take it seriously and watch for changes in their children. And if you’re experiencing symptoms like I did, you should get help,” Milligan said. 

Attendees at the St. Louis University Law School listen to a recording of "Mindstorm," a simulation of audio hallucinations sometimes experienced by people living with schizophrenia.
Durrie Bouscaren | St. Louis Public Radio

Today, Milligan said her symptoms are manageable. Like any illness, she has good days and bad days.

The Centers for Disease Control and Prevention estimate that as many as one in 100 people will develop schizophrenia in their lifetime. Auditory hallucinations — like the kind in the recording — are only one type of symptom. Other people might see or smell things that don’t exist, experience delusions, or withdraw from other people.  

If you’d like to hear the recording, you can download it here on the Places for People website.

The recording is so realistic, it comes with a warning: If you or your family has a history of mental illnesses or vertigo, do not participate in the simulation. But for those who do participate, advocates recommend listening twice: once while doing daily tasks such as laundry or going for a walk, and again while trying to carry on a conversation.  

“Partly it is to have and build a little more empathy, but probably more important, is to try help us reduce stigma, so people can understand people with serious mental illness are just like everybody else,” said Places for People’s Executive Director, Joe Yancey.  

“The reality is resources in general are limited. But our hope is that through this, people not only become more aware and more tolerant, but that they might even advocate for more resources to go to assist people who are having these kinds of conditions,” Yancey said.

For more health and science news from St. Louis, follow Durrie on Twitter: @durrieB

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