Episode 38: You Are Not Your Diagnosis

In this episode,

Lizzie shares her perspective on overcoming trauma, coping with disability, and focusing on her values.

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Post-pod questions to consider

How can you reshape the narrative about your experiences and see your personal growth through your journey?

Episode Transcript

Hey. You're listening to Midnight Philosopher with Lizzie. Thanks for tuning in tonight. 

Tonight, I'm going to do a bit of a different episode. I'm going to talk about my life story. I'd like to give a trigger warning upfront that some of the content might be disturbing, and I'd like to invite you all to take care of yourselves. If you need to leave the podcast or if you need to take a break from it, I invite you to do so. 

I am more than what happened to me. I'm more than my psychiatric diagnosis. I am more than the five months all added up that I spent in the psych hospital. I am more than crying in public and hearing voices and having flashbacks. Please don't reduce people to their traumas. People are not what happened to them. No one should have to live with trauma, and people cope in ways that they know how. And I think that the much more interesting story is not what happened to people, but rather how they coped with it. 

When people meet me, I don't think they think I've been through much. Partially, this is because I'm very lucky and, quote unquote, high functioning. And, partially, this is because I put a front on for the world. I belong to a group of 0.3% of the population. You might say that I'm rare. Mental health professionals might say that I have schizoaffective disorder. Unmedicated, I hear voices, I'm paranoid, I'm sad, I'm unusually elated and irritable all at once. Schizoaffective disorders, like if schizophrenia, a thought disorder, and in my case, bipolar disorder, which is a mood disorder, got together and had a baby called schizoaffective disorder. 

I'll never forget it. When I was 20 and recently diagnosed with schizoaffective disorder, I remember visiting New York City. I remember walking by a sad, un-homed woman screaming at the top of her lungs to someone no one could see. Others might have deemed her, quote unquote, crazy, but I deemed her me. She and I were the same in that she probably had schizoaffective disorder too. She and I were different, of course, in terms of privilege. I don't know her life, but I was very lucky to have had my first full-blown psychotic episode at college, where the health center called my mom who brought me to a psych hospital. I was lucky I could stay with my parents when I left the hospital and they that they loved and accepted me into their home. 

Even though I'm incredibly lucky and grateful, living with the disorder hasn't always been easy. I take 11 pills every day, some of which have side effects such as nausea, rapid weight gain, and the potential for a fatal rash, just to name a few. I have to make sure that I get enough sleep each night, and I can't do substances for fear that I will have another psychotic episode or that my liver will give way due to all the medications I'm already on. Even though I'm highly medicated and in weekly therapy, I occasionally still have bouts of my illness, though they're less pronounced. 

When I was 22, I was also diagnosed with PTSD or Post-Traumatic Stress Disorder. I was living at home with my parents and two triplet brothers after graduating from college in the summer of 2014. My older brother was living elsewhere. One of my brothers, Tim, was incredibly sick with schizophrenia, and he became increasingly violent and unstable. He kicked down my bedroom door one night and tried to choke my brother, Chris. He ranted angrily every day and thought that the demons were everywhere not to get him. 

Now, this is very shocking and could fill up many more talks and podcast episodes, so I will give you the details of what happened as if they are a newspaper headline. I want to spare people as much discomfort as possible. When I was 22, my brother, Tim, who as I said has schizophrenia, killed my mom in the midst of a psychotic episode, and I walked in and found her body. I'll pause just for a second to let people catch up and wrap their minds around that. 

Just as when I saw that woman in New York City, my mind immediately went to "Tim is me." We both have psychosis. It took many, many years of therapy to unravel that just because Tim is my brother and we have similar diagnoses doesn't mean we are anything alike. I would never hurt anyone on purpose, even when I was in the throes of psychosis myself. And that is why diagnosis diagnoses can't define people, because it's the person who impacts the diagnosis and not the other way around. 

My PTSD impacted me greatly. I often felt suicidal and was hospitalized eleven different times. But as I said, I don't want this talk to just be about what happened to me. I want this talk to be about how I moved from, quote unquote, surviving to thriving. I just had to let you know all that happened to see how far I've come. 

My brother, Chris, really saved my life on numerous occasions. For various reasons, my other family members weren't able to show up for me after my mom died. Even though Chris was grieving too, he was able to be there for me in a way that no one else could. We got dinner tonight together every night, mostly at Panera. He listened to me sob in the car. And even though he was also only 22 at the time and also devastated by what happened, he is the reason I'm here today. He made me feel cared for and comforted when the world felt like chaos, and I felt like a shard of mirror being blown about inside. When the world tried to further break me, Chris held me together. 

I also had friends who visited me when I was when I was in the hospital and talked to me on the phone, who hung out with me on the weekends. They were also young adults at the time, and I'm thankful for their support. I worked hard with my therapist to learn to tolerate what I called their "normal people problems," like dating and finding a career. But I feel that in the face of tragedy, you have a choice. You can either grow more bitter or more kind and empathetic. And I actively always tried to choose the latter even when it's hard or when bitterness seems enticing. 

Even in those first few years after my mom died, I did try to have normal people problems too. I did a teaching fellowship for most of the year. I did a first year of an MFA program in creative writing, where I did pretty well. I got mostly As. And at the same time, I volunteered with AmeriCorps. And then, the year after that, I was an assistant first grade teacher. And after that, I went on to get my master's of social work, which I did, and I graduated just five years after the death of my mom. 

In the decade after my mom died, I picked up hobbies. I started making a lot of visual art, writing more, playing dodgeball, doing improv, and making a podcast, like this. I especially use creativity as an outlet for my grief. I made a lot of friends through those hobbies and learned about myself and grew. 

Life still isn't always easy. I still grieve the loss of my mom and my brother who killed her. I still occasionally have schizoaffective or PTSD symptoms. I sometimes still wonder if I'm happy. But over the past decade, I've grown into someone who's mostly resilient, who tries to choose kindness and empathy over bitterness, and who uses creativity and bravery to cope. 

Forest fires wipe out forests, but in the ashes and debris, there's new growth. I feel that trauma is similar. It's the same earth and ground that's always been there, but there's different plants after tragedies, and it takes a while for those plants to really grow roots and become trees in the new landscape. I wasn't using creativity and bravery to cope overnight. I went through a series of bad coping skills first, like drinking too much and self sabotaging. 

But I slowly and slowly got closer to to my true values. Bravery, creativity, and kindness, these are the values, the new trees, that I try to live by in the wake of tragedy. They've always existed inside of me, but it took many years of therapy and medication to help them grow bigger. If you've been through something, big or small, pain is pain. And I hope that you think about what you value, what you want to live by, because it is your values and not your trauma that makes you who you are. 

Thank you for listening to my podcast tonight. I hope you follow me  on Instagram @TheMidnightPhilosopher. Have a good night.