LIVING WITH SCHIZOAFFECTIVE DISORDER

An Interview with Esme Weijun Wang

Society has come a long way in terms of understanding how anxiety and depression can impact people’s lives, but those disorders are just the tip of the iceberg when it comes to mental health struggles. My hot take is that we need to have conversations about less understood disorders to properly destigmatize what can go on in our brains. While I could sit here and share clinical knowledge about different diagnoses, I always think it’s better to learn from people’s lived experience. That’s why I am so excited to share this interview!

Esme Weijun Wang is an incredibly accomplished writer and essayist, who penned the New York Times-bestselling essay collection The Collected Schizophrenias (2019), as well as the novel The Border of Paradise (2016). She also runs The Unexpected Shape, which provides online education for creative writers living with limitations. I’ve been a fan of hers for years and am so thrilled she responded to my random request to share some of her story.

How would you describe yourself to someone you just met?

Hi, I'm Esmé I am a writer with two published books and a public speaker. I also teach. I’m the founder of The Unexpected Shape, which is an online business that provides education to creative writers living with limitations, as well as personal development resources for ambitious people living with limitations. These limitations might be disability, chronic illness, or any other aspect of a person's life that they consider limiting. I love karaoke, and my go-to song is “You Oughta Know.” I'd like to think of myself as a kind person, and I try to be someone that people can count on and trust.

What did it feel like to get diagnosed with schizoaffective disorder? Do you find mental health diagnoses helpful or damaging or a mixture of both?

I was relieved to be diagnosed with schizoaffective disorder because I’d actually known the diagnosis to exist for over a decade before it was given to me. There’s a quote from my second book, The Collected Schizophrenias, that I often refer to. It says something like, “Some people don't like diagnoses, disagreeably calling them boxes and labels, but I like to know that I'm not pioneering an inexplicable experience.” This is very much how I experience it. I like to know that generations of people have been through similar experiences to mine, even though they're frightening and have caused me much suffering.

Why is psychosis harder for society to understand and accept the anxiety or depression? What do we get wrong about it?

Psychosis is difficult to understand because the person who is suffering from the psychosis does seem to be in a different world. They often don’t seem like themselves in a way that is different from a person who is suffering from depression or anxiety. Whereas depression and anxiety often seem like something that is laid on top of the original person, psychosis is often spoken of and thought of as something that transforms the person entirely so that they're not themselves. There's so much that we get wrong about psychosis, including the fact that the person suffering from psychosis is still themselves. I am still myself, even if I believe that my husband is trying to poison my tea and that there are spiders in my brain. I am still myself when I'm hospitalized because of psychosis. I’m lucky enough that I'm able to communicate my experience, but many people are not, and I find that the more difficult it is to communicate one's experience, the less human that person can often seem to others.

What about your life is different than what people expect based on your diagnoses?

I am a person who is more low needs than many people with schizoaffective disorder. I have a life as a writer and a speaker. I run a business. I have a life with my family and my extended family. I pursue painting and podcasting and reading books. I think that given the news that they were about to meet someone with schizoaffective disorder, most people would 1.) not understand what that meant 2.) expect to meet someone who had high needs and could barely communicate.

What is it like to not trust your own mind?

Sometimes it's terrifying, honestly, especially as a person who was raised to believe that my mind was my most important gift. I don't have much more to say about it except that there are things that I do to check reality. I’ll ask the people around me if they are seeing or hearing what I'm seeing or hearing.

What is your current relationship with healing or is that not even a useful word for you?

Besides mental illness, I also live with a bunch of chronic illnesses that are more physical in nature. Quite recently, I purchased a magickal mix of essential oils and herbs that are supposed to promote healing. Healing is something that I'm always pursuing. I spend a lot of my time finding life very difficult, and even though I try my best to enjoy life as it is, I do hope that one day I’ll feel better more often than I currently do.

What is a better approach for people in crisis other than involuntary inpatient treatment?

Honestly, I don't know the answer to this question. One of the reasons that I didn’t become a talking head about schizophrenia after my book was published is that my book asks more questions than it provides answers.

I was never going to become the person who talked about involuntary hospitalization on CNN because I don't come to a neat conclusion in my book about whether or not people should be involuntarily hospitalized or what is a better solution than involuntary hospitalization, simply because I don't know the answer for myself. I think that my community coming around me with care and making sure that I'm not alone, that I'm taking my medications, and that I'm in conversation with my healing team is better than involuntary hospitalization. I haven’t experienced a positive hospitalization yet, and I have been involuntarily hospitalized in a psychiatric ward three times.

What is your current relationship toward your schizophrenia? Do you see it as something outside yourself or as a part of yourself? I

I go back and forth about this and I also speak about this in my book. I think that it’s a part of myself, although a part of myself that is more or less existent at different times, I once asked the actor Andrew Garfield what he does with the characters that he plays once he's finished with them—whether they go away or disappear, or what in general happens to them—and he replied that he doesn't see the character as something that he takes on. Instead, the characters that he plays are parts of himself that he brings out as different people, and I think that that’s a marvelous analogy to living with something like the schizophrenias. It‘s a part of myself that comes out in a different manner than how I normally behave and think and act, but it is still a part of me.

What do you wish you knew sooner?

I assume that you're asking this question within the context of mental health and illness, but I wish I knew basically everything sooner in terms of mental health and illness. I also experience complex PTSD, and I wish I knew more about that and the impact that it can have. It was only this year that I had a five-month evaluation for autism, and the evaluator essentially told me that I was not autistic, but that my combination of complex PTSD and schizoaffective disorder was such that I had the symptoms of autism; it was just coming from something else. I had no idea this could happen. Now that I look at my behaviors and the way that I exist in the world, it makes so much more sense. I wish I'd known that sooner.

You often use the term living with limitations. What does that mean to you and how can people get more comfortable claiming that narrative with their life?

To me, everyone lives with limitations, whether it's chronic illness or disability, or taking care of children, or having less money than you actually need. People are always living with some kind of limitations to their lives.

I think that people can get more comfortable claiming that narrative when they think about the unexpected shape. I named my business that because I often like to use the analogy of a baseball diamond—an expected shape, in this particular case...Baseball exists because baseball has rules. The diamond has a shape. You can't run from first base to third base, even if you might want to. You have to run around the bases as they're ordered. Without these rules and boundaries, baseball wouldn't be baseball, and that's how I see life. Our lives have boundaries, and those boundaries are our limitations. They make our lives what they are.

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As someone who also lives with limitations—from my contamination OCD to my bad knee—I know I will be using this baseball metaphor to make better sense of my life (which is actually perfect because baseball is pretty much the only sport I understand).

For more brilliant insights, subscribe to Esme’s Substack: The Unexpected Shape Newsletter.

xoxo,

Allison

P.S. Thank you all so much for reading! Let me know if you’d like me to continue this interview series and/or if you know anyone who would be a good fit for it!

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