“Close to Your Chest”- On Working Openly With Psychosis

Dear Professor,

Back around 2011, I applied for a position in your lab as a research assistant. I hadn’t been your student, but your research interests were near enough to mine that the job caught my attention. I eagerly told you that part of why I was interested in the position was because of my own experiences with severe mental illness, specifically, schizoaffective disorder. Your face became serious. You told me that that was something I should keep close to my chest when seeking a job.

In the moment, I was fiercely upset.

I vowed that I would not keep this close to my chest. Because I should not have to hide it. My diagnosis was not something I should be ashamed of, nor did it make me less valuable as a human. I was determined to create a world where no one would have to keep a diagnosis close to their chest in order to get a job.

As I continued my academic career, I spoke out about my experiences with my illness.

Though it never worked out that I was your student, you became the academic advisor for a mental health club of which I was a member. We had a positive relationship, and, as the years went by and I went on to take a leadership role in the club, you were a strong supporter of mine. I had big plans to get my Ph.D. and study schizophrenia spectrum disorders so I could help others like myself. But my plans came to an abrupt halt when I panicked about what would happen if I got the Ph.D. and changed my mind. So I hit pause and ventured into the world of non-academia. And those words you said all those years earlier in your office echoed in my head.

As I progressed through positions in retail management, food service, and eventually finance, I was cautious.

I made a point to find an ally in each workplace, someone whom I felt I could confide in – at least to a certain point. There was always someone who knew I lived with a mental illness, though I did not always disclose the details. But I was so terrified of losing my vital source of income that I restricted my advocacy to nothing outside of guest lectures at our University.

In 2017, I made the small, but bold move to dip my toes back into advocacy.

A couple false starts on a blog later, I found myself in a classroom at NAMI Chicago taking an advocacy course, then a course on becoming a speaker for Crisis Intervention Training. For months, I quietly passed on nearly every opportunity to put those skills, acquired under the guise of other activities, to use. But, at last, I found the courage to take a day off to speak. Though I scrambled to produce a lie for my employer to cover the reason for my absence even though none was required. But after that taste, I couldn’t stop.

After that, I took a position in a law firm that specialized in Estate Planning with a subspecialty of special needs planning.

My intent was to feel it out and potentially pursue a law degree and specialize in mental health law. I took the position with the caveat that I would spend Fridays speaking for NAMI Chicago, a venture of which the firm was extremely supportive. But I still withheld my diagnosis in fear of losing the position. We worked with many families with individuals living with psychosis like myself, and the attorneys and my coworkers never revealed an ounce of stigma. But I was still afraid.

At a certain point, I felt I had no choice.

I was struggling and I needed accommodations. I felt the best way to explain my situation was to share everything. And I did. And it went well. Really well. My employers asked me about my symptoms and how they impacted my work and what we could all do to make things easier. We came up with accommodations that didn’t negatively impact the firm and kept me able to work. It lit a fire and my advocacy efforts increased.

By this time, I already had a successful blog and was building a social media following. I was a regular speaker for various trainings as a NAMI Chicago Ambassador. And you yourself, after speaking at an event at our University at which I also spoke, declared that I should give a TED Talk.

Two weeks ago, I started a new position. They hired me in part because of my lived experience with psychosis.

Though my duties include research activities as well, I am also now a core member of a team that seeks to integrate those with lived experience into research and clinical care and life in general as more than just patients. As people. With value and experience and employable skills. Who deserve respect and fair wages and positions that they are often denied or discouraged from even starting on the path that might take them there.

This is not me trying to “stick it to you.”

I know you have long been a supporter of my advocacy efforts. And I wanted to share with you this triumph that you helped me reach. You weren’t wrong when you said my schizoaffective disorder diagnosis was something that might be better kept close to my chest in the work world. But you also helped drive me and support me in efforts that have led me to where I’m at now. Employed as someone who openly lives with psychosis. Employed in part because I live with psychosis. And so that I can help others who live with psychosis achieve the things that I have and more.

Your words helped me in multiple ways.

Your words taught me to keep my diagnosis concealed when necessary. But they also gave me the fire to fight for a world where no one has to hide that. Thank you, Professor. Your support, both inadvertent and completely purposeful, have been invaluable in helping me reach this point. I hope that we have opened the door for others to live without fear and to open their arms and wear their diagnosis as boldly or as subtly as they choose.

Thank you, Professor.

Sincerely,

Katie