Finding a Voice and Passion: My Schizophrenia Advocacy Journey

As a schizophrenia and mental health advocate, I’m incredibly lucky to be able to speak to hundreds of people each year at conferences, in college auditoriums, and during community events. However, I recently had the opportunity to do the very thing that started my advocacy career: connect with my peers.

I have always loved meeting and sharing my schizophrenia journey with other adults living with the condition. Over the years, hearing people’s shared experiences with mental illness, addiction, and even some experiences with incarceration has helped me (and them!) feel less alone. Talking with my peers continues to inspire me — from finding new ways to foster a strong sense of community both in person and online, as well as creating resources and content that can help others better understand what it means to live with schizophrenia and support those navigating this complex condition.

Growing up, I became very familiar with mental illness through my mom’s diagnosis and treatment journey. For decades, my mom struggled with her mental health, receiving incorrect diagnoses and battling symptoms that affected her day-to-day life. Despite these challenges, my mom was always very open with me and my siblings about her experience. She broke the status quo in how she communicated with us about mental health, as we lived in a rural community where these conversations were stigmatized. This open and honest dialogue with her also instilled the importance of understanding what mental illness can look like and how to best support a loved one who may be struggling. 

After searching for an answer to the symptoms she experienced, including hallucinations, delusions, and paranoia, my mom was eventually diagnosed with schizoaffective disorder. Despite still being teenagers, my siblings and I stepped up to become my mom’s primary caregivers, and with her doctors, we helped her find the right treatment plan. Through this experience, I learned about the ins and outs of the diagnosis journey, the path to finding the right doctor and care team, and the difficulty of cycling through treatments to find what works best to control her symptoms. 

After receiving her diagnosis, my mom told me there was a possibility that my siblings or I may develop schizophrenia, since genetic predisposition is one of many factors that can increase a person’s likelihood of having the condition. Yet, when I started to experience hallucinations, delusions, and paranoia, the severity of my symptoms prevented me from recognizing that these things could be connected to something greater. As a result, I began to self-medicate by using illicit drugs to help quiet the voices I heard and the symptoms I experienced to try to feel “normal” again. With the help of my family and now my wife, I was able to connect with doctors who confirmed what was happening: I had schizophrenia. 

While I initially feared what my diagnosis could mean long term, I felt a tremendous weight lifted as I finally had an answer and name for the things I was experiencing. I finally understood the relief my mom had described years earlier when she was initially diagnosed. One of the most significant first steps of my journey was realizing the importance of connecting with and hearing from other people who were also struggling to navigate their schizophrenia diagnoses. After my initial experience with peer support through Alcoholics Anonymous and Narcotics Anonymous, I became more involved with mental health groups and Facebook pages to connect with other adults with schizophrenia, which helped me feel less alone while living in rural Wisconsin. Through these community forums, I realized so many people felt just like I did and that we could all find strength and support in each other both in person and online.

As my involvement with peer support grew, I started exploring other ways to connect with people and hear their stories. It wasn’t until I listened to an episode of A Bipolar, A Schizophrenic, and a Podcast, however, that I realized I could do the same type of storytelling about my journey with schizophrenia to help others. I finally took the plunge by sharing my story on Instagram and TikTok with my first ever “Schizophrenia Storytime” video, which then opened the door for me to create other videos about common schizophrenia experiences, like how I handle hallucinations in public. While my first videos received some negative and stigmatizing comments from others online, I focused on the positive and even used one of these comments as inspiration for my social handle: @schizophrenichippie. 

And although my content creation path wasn’t easy from the start, I felt a sense of purpose in sharing my story. I continue to use my positivity and humor in hopes of helping myself and others cope and come together to overcome the challenges we face with schizophrenia. As a result, I’ve been able to create a digital home and safe community that emulates the advocacy and larger-scale support groups I was a part of online. Since then, I’ve expanded my work with other incredible advocates and organizations such as the National Alliance on Mental Illness (NAMI). Over the years, I’ve also leaned into my love for comedy as a healthy coping mechanism by doing standup sets across the country. I’m proud to say I’ve continued sharing my story authentically, even through tough times. Now I have many more days without constant struggles with my symptoms than I do with them, but it’s important to me to show that everyone has their bad days. 

Additionally, I’ve had the opportunity to host the Unseen & Unheard podcast, which aims to change how we see schizophrenia by revealing the untold and unfiltered stories of people living with it. Unseen & Unheard shows listeners that their stories with mental health not only matter but may be influential in helping other patients and caregivers become more educated about the condition and have hope that recovery is truly possible. I’ve had the honor of being trusted to help share some amazing stories, and I hope you’ll take the time to listen and share the podcast with someone who might benefit from it.

For those of you who are looking to start sharing your story but don’t know where to start, I say the most important first step is just starting. Whether it’s commenting within a mental health Facebook group, showing up to your first peer support meeting, or posting a video about your journey online, any start is a good start! It is your passion and openness that will help to further break the stigma surrounding schizophrenia and foster a greater sense of community for those living with the condition or who have a loved one with it. 

Taking that first leap was daunting, but I will always be grateful I took it because it led me to an incredible career, unbelievable support, and a community that’s bigger than just me. I believe in the importance of helping people everywhere better understand schizophrenia and mental illness — not just for me, but for everyone who may not get a chance to share their own story. As my passion for advocacy continues to grow, 2024 is just the start of many more opportunities to show others that their experiences will not go unseen or unheard. 

For more information about schizophrenia, please visit HopeForSchizophrenia.com or tune into Unseen & Unheard wherever you listen to podcasts. You can also find me on TikTok, Instagram, Facebook, and YouTube @schizophrenichippie.

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