Schizophrenia: Q&A with Writer and Advocate Allie Burke

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Since I want to write about different mental health conditions here on the blog, I thought it would be a good idea to interview people I’ve met or know with various conditions, to get their perspective.

Please keep in mind that each individual experiences different things, though they may have the same condition. For this post, I interviewed professional writer and mental health advocate Allie Burke, who lives with schizophrenia.

Allie Burke is a bestselling author and mental health advocate who lives in LA. She is the Senior Vice President and Co-Founder of the Stigma Fighters, a non profit organization. Her work has been featured in VICE and Women’s Health, and she manages her own column in Psychology Today.

Trigger Warning: Sensitive Topics are discussed below.

What is schizophrenia?

A: Schizophrenia is unique to every person affected by it, I think. It manifests itself differently. But, according to Mayo Clinic, “schizophrenia is a serious mental disorder in which people interpret reality abnormally.”

What is the difference between schizophrenia and schizoaffective disorder?

A: This is an interesting question because I was initially diagnosed with schizoaffective disorder before my diagnosis changed to paranoid schizophrenia, though my symptoms never changed. But my understanding is that schizoaffective is a mood disorder with psychotic features whereas schizophrenia mood symptoms such as depression may not always be present.

What are your symptoms like?

A: I have audible hallucinations (voices), visual hallucinations (though they are rare), and am very paranoid. I live my life convinced strangers are trying to poison me.

What is the stigma surrounding schizophrenia?

A: Stigma surrounding schizophrenia is very prevalent. People (including the media) still think people with schizophrenia are mass murderers. However, the majority of people with schizophrenia are much more likely to be harmed than to harm anyone.

How do you deal with stigma personally?

A: I co-founded a non-profit organization called Stigma Fighters with mental health activist Sarah Fader. Our mission is to raise awareness for people who are fighting every day to survive. I have put 100% of my heart and soul into this organization because I believe in supporting each other against stigma of mental illness.

If the stigma is directed at me, I usually ignore it. I’m not a confrontational person and I don’t find that arguing on the internet ever solves anything. Unfortunately, when it comes to schizophrenia, even people who call themselves mental health activists perpetuate stigma. They don’t know they are doing it of course, but many times schizophrenia is not included in the mental health conversation and as a result people say things that they think are helpful but are really not.

How is working for you?

A: Working for the same company for twelve years has been interesting, that’s for sure. I’ve heard voices at work. I used to hide in the bathroom and cry sometimes. I’ve had to leave my desk for hours to sleep because antipsychotic medication can be so sedating (I almost lost my job over that one). But there are good things about working. Getting up and going to work every day is really good for my mental health.

It gives me a sense of accomplishment and societal functionality every day. I also was given the opportunity to chair a business resource group with a co-worker/friend focused on disability and it was approved by the company executives. I work for a great company and I love my job. I feel fortunate to be a part of it.

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Are relationships difficult for you? (with friends, family, boyfriend)

A: Not really. I understand from my boyfriend (who works in the mental health field) that this is a required question when seeking medication, but I was once asked by a mental health professional if I had friends. I was so offended. I didn’t understand why they were asking me that question, of course I have friends. My friends, boyfriend, dad are really understanding of my condition and give me space if I need it. I imagine that it may be difficult for them when I am having symptoms and am rendered pretty useless, but they never mention anything. They are very supportive.

Can you describe psychosis for someone who has never experienced it?

A: It’s difficult because it is different for everyone. I recently read an article reporting a study that writers “hear” their characters. On Facebook, where someone who shared the article, all the writers in the comments were like “I do!” And I wanted to scream, no you do not.

I’m sorry but psychosis is not like imagining up a plot for a character. It is the most terrifying thing I have ever experienced, and I have been robbed at gunpoint and sexually assaulted, to give you some perspective of what I consider terrifying. The voices I hear scream at me. Everything I do is wrong. For those people with psychosis who cannot determine if the hallucinations are real, it is so awful I don’t even have a word for it.

Imagine being told that you are useless and you should die by suicide every minute of every day. It is one of the most difficult things a person can ever experience.

When I googled schizophrenia, I saw the question: Do schizophrenics feel love? What do you think?

A: I think so. I see my relationship with my boyfriend as a very normal one. Every day, I wake up and go to sleep missing him and wish I could be with him. I tell him I love him, and I mean it. He makes me laugh more than I have ever laughed in my life, and I just feel very lucky, like I don’t deserve this life with him. If anything is love, what I have with him is it.

Name someone famous who lived/lives with schizophrenia.

A: Elyn Saks is a professor of law, psychology, and psychiatry at USC. Her book The Center Cannot Hold is very inspiring and I would recommend everyone read it.
John Forbes Nash, Jr., who passed away five years ago, was a mathematician who was awarded the Nobel Prize in 1994.

What would you want other people to know about schizophrenia?

A: Again I think schizophrenia is different for everyone. I would ask that people don’t use their preconceived notions of schizophrenia to judge people living with the disorder. We may have schizophrenia, but we are human beings. Before you judge, try to treat us that way.

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Thank you Allie for participating in this interview. I hope this post sheds some light on what living with schizophrenia is like. While living with a mental health condition is difficult, it is possible to overcome it and live a good life.

Please don’t contribute to stigma. That’s all we ask. Thank you for reading!

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