An Interview With Stephanie Greer
Care for animals. I have little dogs and my dogs have saved me so many times. My mom actually was shocked at the difference having a dog made. That has helped me over these years. Nighttime is hard with hallucinations and the little dog has helped a lot with that. Having some comfort. That’s wonderful.
Living with schizophrenia presents a unique set of challenges. This condition can profoundly impact an individual’s personal, social, and professional life. But it’s crucial to note that countless individuals with schizophrenia lead productive and successful lives, transforming their experiences into powerful narratives of strength and resilience. We would like to share and shed light on the realities, the strategies, and the triumphs of navigating life with this disorder. For this series, we are talking to individuals who are diagnosed with schizophrenia, who can share their personal journeys, strategies, coping mechanisms, and expert advice to help others in similar situations. As a part of this interview series, I had the pleasure of interviewing Rachel Star Withers.
Rachel Star Withers is a stunt woman, international speaker, video producer, and schizophrenic. She has appeared on MTV’s Ridiculousness, Marvel’s Black Panther, TUBI’s #shockfight and is the host of HealthLine / Psychcentral podcast “Inside Schizophrenia”. She grew up seeing monsters, hearing people in the walls, and having intense urges to hurt herself.
Rachel creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life.
Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
I grew up hallucinating, seeing things like faces in trees was the most vivid one I remember. I saw monsters, which I thought was totally normal because you hear monsters under your bed as a kid, monsters in your closet. I assumed everyone saw the monsters, because why else would there be so many of those tropes?
I went to church a lot. We were a very religious family. You would hear the preacher preaching three times a week about demons and angels. Obviously everybody sees these things, right?
I thought it was normal up until about age 17. When I was in high school, I made a comment once about it and one of my friends was like, “what are you talking about?” And that’s when I thought, “oh crap”. It literally did not occur to me until that moment. And then I shut up because it was high school and I’m not stupid.
I didn’t bring it up again for probably another two years. I was away at a Christian school and my symptoms just got really bad there. So they jumped in. They “helped” me with an exorcism. Obviously that did not help me. Only thing worse than having an exorcism is having an exorcism that doesn’t work. Because now you’re labeled as choosing Satan.
It took me a few years after that to get diagnosed which was in my early twenties. I was eventually diagnosed with paranoid schizophrenia, which doesn’t exist anymore now it’s just, schizophrenia spectrum, but originally my diagnosis was paranoid schizophrenia with dysthymia, meaning long term depression.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
As far as quotes, I always love Anais Nin. “Life expands or contracts depending on one’s courage.”
I really like that. That’s always been my thing. I’ve had a lot of weird experiences in life, very bizarre, over the top things. I travel a lot. I take a lot of chances. I’m always down to try new things, which of course leads to these bizarre things that happened to me.
Let’s now shift to the main part of our discussion. Can you share what your journey with schizophrenia has been like?
I knew something was very wrong with me in my early 20s, and I went to a psychiatrist. I didn’t tell them everything, because I didn’t understand how it worked. I think most of us, if you just go find TV shows, you think, if they find out, “they’re gonna lock me up”. That’s just what we think. Which is stupid, because healthcare is very expensive. They don’t lock you up unless you have very good insurance or money. I didn’t understand that at the time. I just thought, they’re gonna put people away. But they don’t.
So I held back and he said I was like, borderline schizophrenic, which I don’t think is a real thing and everything just got so much worse.
A year later, I went back to a different psychiatrist and I told them everything. That’s when I got my official diagnosis.
I had to let my parents know. This was before Obamacare, so mental health didn’t count as health. I couldn’t afford it. It was around $500 just to see the psychiatrist. I was looking at over a thousand dollars in medications. So, I sat my parents down and I told them and obviously it took some adjustment for them, but yeah they accepted everything and they wanted to jump right in and they’ve been my main support all these years.
Was there a turning point for you when things started to change for the better? Can you please share a story?
I’d say the main turning point was between junior and senior and college. In my freshman year, I was taking the maximum course load, doing fine, and then by the time I was at my junior year, I was taking the minimum courses, and I could barely handle that. I was really struggling.
It wasn’t so much even education. The issue was just sitting through the classes, and everything became too much. I was incredibly suicidal, and I was finally able to have electro-compulsive therapy (ECT). For me, it worked wonders.
I always say ECT is a last resort. It’s a last resort for a reason. I did get some brain damage from it. But for me ECT is one of the main things that saved me. It doesn’t help schizophrenia, but it took away that deep depression. When the depression was less, it made everything else so much easier to deal with.
My hallucinations are still there, because anti-psychotics don’t work well for me personally. I have treatment resistant schizophrenia. The ECT stopped that just intense suicidal the desires, which just made everything else in my life so much easier when you don’t have this constant urge to go and hurt yourself.
What do you wish mental health professionals understood better about navigating schizophrenia?
It’s shocking to me how many mental health professionals don’t have real world experience with people with schizophrenia, with bipolar, with serious mental disorders, or the experience that they’ve had is just the crises.
Multiple times I’ve went to a psychiatrist, the first time I’m meeting them, and they said, “Oh, you don’t have schizophrenia.” One lady was like, “You don’t have schizophrenia. I’ve seen those people. They can’t talk.” I get it. She had probably done an internship in the emergency psych ward. Yeah, and if you’re in an emergency crisis, it’s true, your talking doesn’t make sense.
But, I’m not in crisis right now. This is just me, I have schizophrenia but I am managed. So few doctors know how to handle the management state. The goal is to get the person there, but then once they’re there, the professionals seem to say, “come back when you’re bad again. Roll back around next crisis. Then we got you.”
As someone with schizophrenia, you have to do all the research yourself.
I got tardive dyskinesia from all the antipsychotics I was on. No one warned me about this. No one told me about this. I went to the normal doctor, shaking, and, they have little iPads nowadays. The doctor told me “I was Googling your symptoms, and the movie Tremors came up!” I thought, “Wow. Okay. You don’t think I googled it already?” It wasn’t for a few more months until we found out it was tardive dyskinesia, which unfortunately at that point was permanent.
What was most upsetting for me was that, nobody warned me. Technically you’re supposed to do a once a year scale for it. In 10 years, no one had ever done that. No one had brought it up to me. No one, none of the mental health people who’ve been giving me all of these meds. Are you kidding me? And it’s just crazy.
It’s on you to go and find out, which is ridiculous if you have schizophrenia, right? You’re already having trouble with the basics and now they’re expecting you to be this amazing researcher, be this amazing advocate, be on top of the new drugs, be on top of everything.
What are a few of the biggest misconceptions and myths out there about schizophrenia that you would like to dispel?
What has been a very interesting cultural shift that I’ve noticed is when I first started advocating, it’s almost 20 years ago — people were scared of serious mental disorders like schizophrenia, because of the movie serial killers. I’ve actually been asked multiple times in life, have you ever killed anybody? I think, “Would I be walking around?”
Fast forward, now it’s the whole mass shooter situation. That’s what people associate with schizophrenia more and more. The thinking goes: “They’re insane. What’s the worst mental disorder? Schizophrenia.” I have seen that being a large shift in the past five years or so. Which I think is very scary for people with serious mental disorders.
The research, of course, is different. I did an Inside Schizophrenia episode on mass shooters, and then a few months ago we did one on serial killers. The woman who basically invented FBI profiling was on the show, Doctor Ann Wolbert Burgess. She’s incredible. We were able to interview her because she was one of the first ones who said, “Wait a second! You’re looking for these serial killers as being these out of their mind, crazy people. She goes, if the serial killers were crazy, we would have already caught them.”
Crazy people don’t evade justice for five years. This was the main turning point of the FBI realizing, okay, we’re not just looking for escaped mental patients. We’re looking for everyday people. That’s why they’re able to escape the FBI for years, is that they look like everybody else.
What are 5 things you learned from your journey that you think other people navigating life with schizophrenia or their family would benefit from knowing?
- The most important is that: you’re not alone. You are not alone. It’s actually ridiculous how not alone you are. One in a hundred people will have schizophrenia. And if you just think about that, it’s a lot. How many times you’ve met a hundred people, been at a concert, a school, been at some event, you think, wait a second, if one in a hundred, that means I can’t even be the only one in this auditorium. There has to be like… multiples around. And I think that’s also something that a lot of mental health professionals forget is that schizophrenia is not super common, but it’s also not like one in a hundred thousand. It’s one in 100. And they are functioning just fine. They’re managing just fine.
Sometimes just knowing that someone exists really helps people. Today when you Google schizophrenia, there are people making all these Tik Tok videos. There are people, all over the place. 17 years ago it wasn’t like that, you would search “schizophrenia” and only find cold research articles and horror movie references. That is why I started making YouTube videos I was like, okay, even if it’s on like the 500th page of Google, someone will find this video and be like, okay, I’m not the only one.
2. You really have to do your research. If you’re a loved one, family member, friend, step in and help when you can with that kind of stuff. It’s a big issue. There are so many side effects with the antipsychotics, antidepressants, etc. I just wish someone would have let me know. I still would have taken them, but it wouldn’t have been such a shock when this random thing started happening. The tardive dyskinesia for example and when my cholesterol shot up and went through the roof. They were telling me I need to stop eating fast food. I’m like, I haven’t eaten fast food in five years. I eat so healthy and I don’t know why my cholesterol shot up. Then finding out it has to do with a lot of the medications changing how your body processes things. I didn’t know that. It took me having to research and look into it.
So many times, I thought literally, I was hallucinating issues. The shaking and things and it turns out no, I really did have them. It wasn’t in my head.
3. Build your support system wherever you can. For some people, it can’t be your family and that sucks, but that’s the way it is. Whether it’s like them pushing you out or religious situation or honestly, a financial situation. Some people just cannot, but you can build your support system through other ways, especially finding support groups. NAMI is great for lots of different support groups and classes.
It’s hard to do with schizophrenia, but there are people who want to support you and want to be part of your support system. You just have to find them.
4. For people with schizophrenia get a job of some kind. I always push. I know a lot of people on disability, get a part time job, get a volunteer job, do something that gets you out of the house, like forces you out. Even if you think “I can’t handle being around people” then go volunteer once a week at the animal shelter, whatever.
5. Care for animals. I have little dogs and my dogs have saved me so many times. My mom actually was shocked at the difference having a dog made. That has helped me over these years. Nighttime is hard with hallucinations and the little dog has helped a lot with that. Having some comfort. That’s wonderful.
Are there any books, podcasts, or other resources that have helped you understand or manage your condition better?
Obviously my podcast, Inside Schizophrenia.
NAMI.org The National Alliance on Mental Illness has tons of amazing resources.
“The One Thing We’ve Never Spoken About” by Elfy Scott is eyeopening book about people navigating schizophrenia.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. 🙂
Oh, I’m gonna shoot my shot here, Ruby Rose. That’s because I have a huge crush. A second, I would say Snoop Dogg. If I’m going to sit and talk with someone, I want them to be fun. I feel like he would be very chill and like a cool guy.
How can our readers further follow your work online?
You can find me on my website https://www.rachelstarlive.com/
You can also check out the podcast I host called Inside Schizophrenia https://www.psychcentral.com/is
Thank you for your time and thoughtful answers. I know many people will gain so much from hearing this.
About The Interviewer: Stephanie Greer, PhD is the Co-founder and CEO of Akin Mental Health — a company dedicated to guiding families on their journey supporting a loved one with mental health challenges like bipolar disorder, schizophrenia and severe depression. Stephanie is passionate about this topic from her own personal experience growing up with a mother who struggled with bipolar 1 disorder and found a path forward to overcome the obstacles and live well. Stephanie’s professional experience includes a doctorate in neuroscience as well as design research roles at Hopelab and Apple. Stephanie brings this personal passion together with her world-class science and technology background to support families across the US in their personal journeys supporting loved ones with mental illness. To learn more about Akin Mental Health and join our community, visit us at akinmh.com.
Rachel Star Withers: How I Navigate Life With Schizophrenia, And How You Can Too was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.