Beyond the Label: Living With Schizophrenia Featuring Kody Green

Kody Green joins “Hope Starts With Us” to share his story of living with schizophrenia. From diagnosis to incarceration to his thriving present-day life, this episode will explore the impact of Kody’s experiences on how he has evolved over the years. As a content creator with a following of two million across platforms, Kody’s story resonates with so many who want to feel community with someone who lives with mental illness and learn more about what it’s like to navigate schizophrenia.  

Learn more about Kody’s experiences with schizophrenia through his social media. Find him @schizophrenichippie on Instagram and TikTok.

Mental health care isn't one-size-fits-all. NAMI knows the importance of culturally responsive care and support, so we're celebrating with the "Seen. Heard. Understood." campaign. 

Find an event near you. See yourself in the community. Make your story heard. Find understanding support. 

Visit nami.org/BebeMoore to learn more. 

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

"Hope Starts With Us" is a podcast by NAMI, the National Alliance on Mental Illness. It is hosted by NAMI CEO Daniel H. Gillison, Jr. 

Co-executive produced by Traci Coulter and Connor Larsen.

Transcript

0:00

Just because someone has a mental illness or has schizophrenia doesn't mean they're inherently violent or inherently a bad person. I think schizophrenia still has a very negative stigma surrounding it. A lot of people view it in a very scary, negative way. Welcome to Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. I'm Dan Gillison, NAMI's CEO. NAMI started this podcast because we believe that hope starts with us. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories, and hope starts with us breaking the stigma. If you or a loved one is struggling with a mental health condition and have been looking for hope, we made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode with each conversation brings you into that collective so you know you are not alone. So today's guest, Kody Green. He is the author of Minds Over Meetings: A Personal Perspective on Wellness in the Workplace. Kody is a motivational speaker. He is a content creator with over 2 million followers across social media platforms. He is deeply involved in NAMI Southeast Wisconsin and he is a person living with schizophrenia. Now, the other thing that we want to make sure that you know is that this is not Kody's first time joining us for an episode of Hope Starts with Us. Kody joined us for episode 35 of this podcast. For our listeners who weren't aware, Kody, you have an incredible story. For listeners who might not have heard it in our previous episode, would you please share your story of being diagnosed with schizophrenia? Yeah, absolutely. I was diagnosed with schizophrenia at 21 years old. I started experiencing symptoms at 18, in my first year of college, and before that I was raised by a mother with schizoaffective disorder. So schizophrenia and mental illness has kind of always been a part of my life. I grew up in a small rural community where people didn't really talk about mental health or mental illness. And so it wasn't until after my own diagnosis that I was able to get the help and resources I need to-- needed to live a full and functional life. I was someone who unfortunately didn't get the help I needed right away and struggled with addiction and eventually was incarcerated because of my illness. But once I got out, got sober, and got diagnosed, I was able to, with the help of family advocates and people around me, really turned my life around and be able to become an advocate and start sharing my story and seeing the importance of storytelling that could help not just me with coping, but also help other people who are early on in their own diagnosis. Kody, you know, we want to say thank you for how frequently you share your story. And we always say, you know, you are not alone. You sharing your story helps so many people realize they are not alone. And I just want to mention that as we continue our conversation. So Kody, many people living with mental illnesses experience involvement with the criminal justice system based on our National Criminal Justice Month work earlier this year in March, we know that every year about 2 million people with mental illness are booked into jails, and roughly 2 in 5 who are incarcerated have a history of mental illness. What was your experience? What was the experience, excuse me, of being incarcerated while living with schizophrenia, like for you? For me, it was very telling because I remember going through the process undiagnosed. No medication, no treatment, really struggling to understand what was going on. But once I was finally incarcerated, I realized that a lot of the people who were in jail were very similar to me. They either were undiagnosed with severe mental illness, or they were struggling with addiction. I didn't meet a lot of people who were bad people. It was people who needed help that they didn't get. And I think that really shaped my understanding of not just the criminal justice system, but how much people aren't able to get access to treatment, medication and insurance things they need to live full and functional lives. You know, Kody, as you're mentioning this, and as our audience that's listening will know we have some prescribed questions. But I want to interact with some of the things that you're saying. And, you know, as you observed in your experience, there were people there that needed help and they needed medication. They needed a lot of different things, but they, some of them didn't know they needed it. And it was just so observant of you, of what you saw when you were there. I want to go back to also, you said you grew up in rural America. You go around the country speaking. What have you seen, Kody, in terms of the similarities from a major city community, if you will, versus a rural community? What have you seen that's similar? And then what have you seen that's so very different from rural to, you know, say a larger, larger community? Yeah, I think something I've noticed that's similar is mental illness doesn't discriminate. So it is in every community. It affects people all over the country. And no matter where you go, there are people struggling who need help or need to know they're not alone. I think some of the differences I've noticed is growing up in a rural area, there's a lot less resources, there's a lot less nonprofits that might be able to help with diagnosis or with other aspects of care. And there's a harder time getting in to see medical professionals, which can make it more difficult for someone to get a proper diagnosis. Kind of like what happened in my case. But that being said, even with, you know, rural communities having a lack of resource, I think one of the really special things about small rural communities is a sense of community that you just don't see in big areas. And my biggest, my biggest frustration is knowing that in small communities there is this sense of like knowing and understanding your neighbor until it becomes an uncomfortable conversation. So people had a really hard time talking about mental health, mental illness, things like that. Even though like they really tried to look out for their neighbors, their communities. And so a lot of the advocacy I do in rural communities now is trying to get people just to better understand, so they aren't judgmental and realize that they can help if they really are striving to make sure that people in their community are safe. There are ways they can do that through advocacy and awareness. You know, Kody, again, I'm going to-- you're going to hear these two words multiple times during this conversation. Thank you. Because you're making such a huge difference. You know, we just had our convention and the theme for our convention was Community, Connection, and Care. And that's what you just spoke to in terms of what it looks like in terms of community and connection. So thanks for sharing that. And may I ask you, based on your experience in the criminal justice system, Kody, what do you wish other people knew about mental illness and incarceration? I think for me, the biggest thing was I wish people knew that just because someone has a mental illness or has schizophrenia doesn't mean they're inherently violent or inherently a bad person. I think schizophrenia still has a very negative stigma surrounding it, and I think a lot of people view it in a very scary, negative way. And a large reason for that is a lot of people haven't met someone with schizophrenia, or they don't realize they've met someone with schizophrenia who's living a normal life. And so they-- the only idea they have about schizophrenia, the only representation they've seen is what's appeared on TV shows or movies, which unfortunately just isn't always accurate to what it's really like to live with this diagnosis. Yeah, yeah. Thank you. So, Kody, when you return to your community after incarceration, what led you to becoming a speaker and a content creator? I mean, you could have just navigated your experience and said, okay, I'm going to reboot it. I'm going to do this. But you decided to use your voice. What led you to becoming a speaker and a content creator? My main goal when I started making content was just to be the advocate that I needed when I was first diagnosed. I felt very alone when I was originally diagnosed with schizophrenia. And I don't say this to sound dramatic, but my diagnosis felt like a death sentence because I had never seen anyone living a normal, functional life with schizophrenia, and so I didn't have any hope for any sort of future. I was being told by people around me, I would never get to have a normal life. I'd never get to live, you know, like everyone else. I remember a few, a few months after I was diagnosed, I actually had a doctor tell me that I would never be able to work again. And it wasn't a question, it was a statement. He said that I should get used to being on disability, because I would never be able to work in a traditional workplace, and one of my proudest moments as an advocate was bringing him a signed copy of my book about mental health and mental illness in the workplace. In the workplace. Oh yeah. In the workplace. Yeah. So is that part of why you, you know, you decided-- and that's a question later and here. But I'm going to go to it now in terms of wellness in the workplace, what drove you to your the title of the book and electing to focus on the workplace, Kody? Well, I think similar--you just asked about like becoming a speaker and a content creator. And I think, I really do believe that you don't really choose to be a mental health advocate. You fall into health advocacy. You know, it's like if it's something you're passionate about, if it's something that's greatly affected your life or the lives of the people around you, it's something that you want to share more about and help people understand. And so that was advocacy in general for me. That's why I started social media. That's why I started creating content about my diagnosis. But it's also why I wrote my book, because I wanted people to better understand that there is a very large number of people with schizophrenia and serious mental illness that are unable to work, and we've really looked at it like it's a problem of the patients or the people living with schizophrenia, when a lot of the times it's a problem of the workplace, it's the problem of not willing or not being able to accommodate people. It's all things that I struggled with when I was trying to reenter the workforce and trying to figure out how I was going to, you know, live a normal life and be able to pay my bills and do all the things that everyone else was doing. So that and advocacy, it's just something that I felt the need to talk about because whether I liked it or not, it was a part of my life. Yeah, yeah. And how long have you been doing it now, Kody? So I started making videos on social media, specifically on TikTok in 2018. So that's when my advocacy really started, and I didn't really plan on being an advocate. I just wanted to talk more about my diagnosis. I wasn't able to share about it publicly back then, just because I was very afraid of like the backlash, what people would think. I was ashamed of, of my diagnosis, like it was somehow my fault. And so when I started making content, it was just to get some of it off of my chest and try to find people who were also struggling so I could feel less alone. And it was during that time that I also found a NAMI local peer support group, and I started attending that, and that was between social media and that NAMI support group, that's largely what led to, you know, me becoming an advocate. Wow. And so you've been doing this now eight years, and I'm so glad that you found NAMI. And NAMI has been a part of your work. So going from diagnosis to incarceration to motivational speaker, that is an incredible journey, buddy. What do you attribute your recovery and continued growth to and what has helped you along the way? I mean, there's so many, so many things, I think, that were crucial in my recovery. I always mention medication because it was really what gave me the stable foundation to focus on other things. But I also had incredible family support. I had a mom who went through the mental health system herself. She's diagnosed with schizoaffective disorder, so she was able to help me navigate that system a little bit easier than I think most people. And I also had, you know, my incredible supportive wife. I had a community of people online. I think that's largely what's kept me going over time as I've done advocacy. I think there's so much going on in the world, and I feel really defeated a lot of the time. But then I see my comment section and it's filled with patients who are thanking me because my story helped them feel less alone, and caregivers telling me my stories help them better understand their loved ones who are struggling. I even have doctors and psychiatrists reach out thanking me because my story helped them better understand the patients they work with. And so I see the need for the content. But I also see the difference it makes. And so I think a lot of what keeps me going, not just through my advocacy, but through my recovery, is the communities that I've not only that I've built through social media, but the communities that I surround myself with. As you mentioned in my intro, I'm very involved with NAMI Wisconsin. I'm on the board of directors for NAMI Wisconsin. They've been incredible. Mary Kay is our executive director. She is so great and so I've found a community through them. I found communities in the recovery space as well when I was getting sober. And so I found all of these little communities that together have kind of built me up and given me such stability to be able to focus on the things I need to, to not only survive, but thrive. Yeah, it's almost like the construct of a quilt and all the different patches that have brought the Kody quilt together is amazing. And all these different elements you just shared. Wife, mother, Mary Kay Battaglia, you know, NAMI, NAMI Wisconsin and all of the-- and even some of the doctors that have reached out. This is fantastic. So, you know, Kody, you said something at the very onset that at 18 years old, you started having symptoms and it was 21 years before you actually were diagnosed, I think. So, 20 years. So what was that 18th year all the way until you were 21? What did that look like for you, Kody? Well, as soon as I went off to college, you know, I was, I was really excited because I up until that point, I was a very neurotypical kid. I had been a full time caregiver for my mother with schizoaffective disorder. So I was very aware of what mental illness looked like, what schizophrenia looked like. But I myself hadn't really experienced any of it. And it wasn't until my first year of college I moved away from home. I don't know if it was the stress or what it was, but whatever the environmental factor was combined with my genetics, it was that first year of college that I, that I started having my own symptoms. It started with isolation, paranoia. I started experiencing auditory and visual hallucinations, and then I was having delusions. And so I quickly went from, you know, a really high functioning kid who was not only going to school full time, but working full time to someone who couldn't even take care of myself anymore. And the people around me had a pretty good idea of what was going on because of my family history. But as soon as my symptoms started, I lost the awareness and insight to really get the help I needed. And so that's why it took almost three years for me to get a proper diagnosis. And it wasn't until after, you know, I tried to use addiction as a way to self-medicate. And it wasn't until after I ended up in jail and got out of jail that I was able to get that that proper diagnosis. Wow. Wow. This is so incredibly important for everyone to hear. And thank you for sharing that. But something else you said that I wanted to mention, there was a point when you were seeing medical professionals and you, you know, based off of some of the feedback they were giving you about what you weren't going to ever be able to do, you had no hope. And I wrote that down because, you know, this podcast is called Hope Starts with Us. So, you know, thank you for sharing that. But that's very telling from the standpoint of you are in this place where you are like, what do you mean? This is, this is my life. You're telling me that there's--now if you don't feel hopeful, Kody, you feel hopeless. So I really do appreciate you sharing that and I'm, you know, just trying to make sure that I'm capturing some of the things that you're, you're sharing with our listeners because it's very important. So may I transition to the book for a second? Yeah, absolutely. All right.

Your book Minds Over Meetings: 17:51

A Personal Perspective on Wellness in the Workplace. It explores mental health in the workplace. And that's a very important area for NAMI as well. What drove you to write about workplace mental health and what do you hope people take away from the book, Kody? I really wanted to make workplaces something that we could be more open about mental health and mental illness. I think in previous years we've finally started having some of these conversations, thanks to organizations like NAMI and even the Society for Human Resource Management has started talking about some of these things. But there's still a lot of workplaces that have yet to really dive into the conversation, not just about, you know, general mental health and burnout and things like that, but also trying to make sure that people with severe mental illness or other disabilities are able to be able to join a workplace and be able to function and be able to thrive. I think, you know, it was important for me because not only do I have severe mental illness, but every single person experiences mental health, whether good or bad. Every single person experiences mental health, and workplace burnout is the most common type of burnout. So I wanted to be able to talk to people not only about severe mental illness like schizophrenia, and figuring out how to work with, you know, an illness like that. But I also just wanted to talk about general mental health and how any single person could go from someone who has no struggles in the workplace, who is able to function and thrive, to a person who might experience a big life change, or might experience a loss of a job and have to go to a new industry and like literally anything could happen that could make any person struggle with mental health. And so it's so important that we are open about that conversation and realize not only can it happen, it will happen at some point in every single workplace where someone needs more assistance. Yes, it will happen. It's not a matter of it not happening. It will happen. Kody, thank you for that. And one of the things you said is that every single person experiences mental health. And we think about what Dr. David Satcher, the 16th Surgeon General, said he actually coined the phrase that is now used by the World Health Organization."There is no physical health without mental health." You can't detach them. And a lot of times that's what we do. So, you know, thank you for sharing that. It's so important that every single person experiences mental health. Mental health and physical health are joined. So, you know, you can't think of one without the other. But many times that's what we do. So thank you for that and appreciate it, Kody. Now you as a content creator, you touch so many lives, at least 2 million, 2 million across multiple platforms. What does that reach mean to you and how do you hope to use your platform going forward? To me, it was such an important thing to realize. Not only wasn't I alone, but that so many people cared about what I was going through. When I first started sharing my story, I just didn't think that that many people would have to care what someone with a severe mental illness or someone in recovery would have to say. And so many people have joined to not only be a part of my journey, but to help me spread awareness to schizophrenia. And so for me, my main focus with the platform is to continue helping people like me feel less alone. But I also want to make sure that I'm using my platform to amplify voices of other patients, because not everyone will be able to relate to my story. I had a lot of luck and a lot of privilege in my story that a lot of people don't have, and so I want to make sure that I'm, you know, sharing the stories of other advocates. I also want to make sure that my page remains a place where people can trust that, you know, the information they're getting is based on personal experience, based on lived experience. And try to make sure that I'm not adding to any medical misinformation that might be out there. I think in this day and age, combating misinformation is a huge thing. And so I want to continue to use my platform to make sure that patients, no matter where they are, can feel like they understand that, you know, they're not alone and they have someone that they can look to and realize that no matter if they grow up in New York City or Westby, Wisconsin, a town of 2000 people like I grew up in that there's someone out there that understands. Yeah. And then that is so valuable. And you're getting ready to to get on a plane to go and help a community today. And you were so busy doing Mental Health Awareness Month, the month of May. Again, we're so proud to know you and so proud of what you're doing. I have a couple of questions. One, I want to ask you. You know, you were an 18 year old. You were starting college. We're just coming up to, you know, a lot of graduations across the country and a lot of young people that are going to be going off to college and a lot of parents that are a little reticent about, you know, losing, losing their child to the world and them going off to college. What would you tell parents right now? And that young person? So two, two questions. What would you tell the young person to kind of navigate or manage or be aware of as they begin that next, that next part of their journey and the stressors that come with being away from home? And then the flip of that, after that is the parent. What would you tell the parent to be looking for? Yeah, I think for the student, one of the best things I think students can do is make sure you're taking care of yourself. It's so easy to jump into being an adult and forget to take care of yourself. And, you know, I want to make sure that people, whether they're, you know, really passionate about school or their future career, you got to be able to take care of yourself if you want to do those things long term. So self-care is always so important. But I also think educating yourself early on about mental health and mental illness can really help when, if and when you start to struggle with symptoms yourself, or if one of your close friends starts to struggle, which is kind of my next piece of advice. Look out for people around you and hope that they will do the same. Because I speak a lot now to colleges all over the country, because that's where I was when I had my first episode of psychosis. And unfortunately, 18 to 25 is the most common age range for men to experience a first episode of psychosis. So it's a really crucial time to make sure that people are educated and looking out for each other and looking out for themselves and for parents. I would kind of extend that and say the same thing educate yourself about mental health or mental illness, kind of know what early signs to look out for, and also just make yourself a safe space for your kid. Make sure they feel comfortable coming back and having these conversations with you. Like I said, I grew up in a rural community where, especially as a man, I was kind of told to, you know, not burden people with any issues I had. I was supposed to figure it out very much that like pull yourself up by your bootstraps mentality. And so I never felt safe going to friends or family about issues that I started having, which is why I think that's part of the reason I didn't get early intervention, and I wasn't able to get help until it was already kind of too late. So I think, you know, make sure that if you're a parent, you are not only having those conversations, but you're educating yourself about mental illness and mental health as well. Kody, thank you. And to our young people that are listening and to the parents. But tell the young people, if you're a parent, take care of yourself. Make sure that you're not just focused on the academics and this, but whatever it is that you enjoy doing that, that helps you take care of yourself as you, you know, go off to college, do that. The other thing is, look out for your close friends. And also as you're, you know, navigating college, look for those safe spaces where you can, you know, talk and associate with people that care. Kody, before we get to the close, you mentioned something about between the ages of 18 to 25. That's the age when men I think you said, if you could go back and repeat that, I'd love our listeners to hear this again. Yeah. So late teens to early 20s are when men are most typically experiencing a first episode of psychosis. So it's largely when we see a lot of diagnosis of not just schizophrenia, but bipolar disorder and other things like that. So it's a really prevalent age for people to experience some of their first major mental health issues. And for women, it's a little bit later, but it's still in like, I think mid 20s to early 30s for women. And so it's still like such an important age to make sure people are educated. And you also mentioned like just now you talked about finding communities in college. And I just want to shout out NAMI On Campus for anyone who is going to college and wants to learn more about mental health. NAMI On Campus was not available in my college when I was first going to school, but when I went back to college after I started advocacy, there is now a NAMI On Campus at the school I went to, and I can't talk about how important I think that is for people who might be going through a first episode or seeing a friend go through it to have an organization like that on campus. Yeah, thank you for sharing that, because that's one of the resources that we have. And as young people are matriculating into, you know, that next stage of their lives and furthering their education, NAMI On Campus is an incredible resource. And the administration of universities and colleges, the more they know that that's available as an asset for the students is fantastic. So thanks for sharing that, Kody. Really do appreciate it. As we get to the wrap up, you know, we always like to ask a question with every one of our podcast guests. And you know this from the 35th episode that you did for us that we wrap up with this question, the world can be a difficult place, and sometimes it's hard to hold on to hope. That's why with each episode, we dedicate the last couple of minutes of our podcast to a special segment called Hold On to Hope. Kody, what helps you hold on to hope? I think especially in recent years, what has helped me is being able to connect with other patients who are going through diagnosis. And I'm ten years into my own diagnosis, but I get to meet people who were weeks into being diagnosed, who I see hope in them that I never had at that time, and seeing that makes me hopeful, not only for myself but for the future of mental health. I think Gen Z has become so good about having conversations that my generation and previous generations were terrified to have, and so I'm so hopeful that we're getting ahead of some of this, that we're actually we're not doing preventative maintenance anymore. We're getting ahead. We're making sure that we can get to people before crisis. And I think that's so crucial to making sure that people get the help they need, get early intervention and hopefully avoid some of the things that we've seen in the past with homelessness, incarceration and addiction that me and several other advocates and people with schizophrenia or mental illness have gone through. I think there's so much hope in the awareness that's being spread and the awareness efforts out there. And so I-- every day and finding new things to be hopeful about. This is fantastic, buddy. We so appreciate you and are so proud of what you're doing and what you've been doing for eight years. So, you know, we're so happy to know you into our audience. This is Kody Green. Okay, Kody, how can people reach you? I know we're going to put that on the podcast, but if you'd like to share any of the social media access, we want to give you that opportunity. Yeah. So you can find me on any platform. My username is @schizophrenichippie. Not one I chose. It's one that my community chose for me. You can also find my book, Minds Over Meetings. And lastly, I have a podcast that I do with a schizoaffective advocate named Kit Wallace. Our podcast is called Skits and Giggles, talking not only about schizophrenia, but finding humor in recovery. This is fantastic and thank you and to your co-host for your podcast. And it sounds like it is so cool. So you know, thank you, Kody Green, for being you and doing everything you do and sharing your story. So as we as we wrap up, I just want to say this has been Hope Starts with Us, a podcast by NAMI the National Alliance on Mental Illness. If you're looking for mental health resources, you are not alone. To connect with the NAMI HelpLine and find local resources, visit nami.org/help. Text "NAMI" to 62640 or dial 800-950-NAMI. Or if you're experiencing an immediate suicide, substance use, or mental health crisis, please call or text 90 to speak with a trained support specialist or visit 988lifeline.org. I'm Dan Gillison, your host. Thanks for listening and be well.