Tell us a bit about yourself!
I’m a writer in my early thirties — born in the Midwest and living in San Francisco with my husband, pup, and miscellaneous old things.
My debut novel, THE BORDER OF PARADISE, is being published in 2016. I currently run esmewang.com, where I provide resources for aspiring writers to develop mastery and resilience on the path to building a creative legacy; as a part of that work, I also offer a limited number of writing mentorships.
For those of us who don’t know, what is Schizoaffective Disorder? What are the symptoms?
Schizoaffective disorder is what I call a schizophrenia wedded to a mood disorder. I’ve been diagnosed with schizoaffective disorder, Bipolar Type, which means that my particular brand of mood disorder includes the severe manias and depressions associated with bipolar disorder.
Symptoms vary among those diagnosed with schizoaffective disorder, but my most popular symptoms include both “negative” and “positive” symptoms — I’ll explain that in a second — as well as the elations and depressions of bipolar disorder.
To be diagnosed with schizoaffective disorder, psychotic symptoms must have occurred for more than two weeks continuously, and must occur when the person is neither manic nor depressed. This second part is important because severe mania and/or depression can also involve psychosis.
Using the words “negative” and “positive” has always struck me as bleakly hilarious when talking about psychotic symptoms, but that’s what they’re called; “negative” symptoms refer to things such as being unable to talk or motivate oneself, while “positive” symptoms refer to delusions, which are false beliefs, and hallucinations, which are false perceptions.
What are the most common misconceptions about people with a schizoaffective disorder diagnosis?
Most people don’t even realize that schizoaffective disorder exists, as it’s relatively rare.
However, I’m constantly being reminded of misperceptions regarding schizophrenia and psychosis. Schizophrenia does not mean a split personality. (There are few things more galling to me than someone saying, “I ate Japanese food last night, Italian food for lunch, and Greek food for dinner! Totally schizophrenic!”)
To be psychotic does not mean that someone is homicidal, a serial killer, or your bad ex; it doesn’t even mean that someone is yelling expletives on the bus.
I’ve been psychotic while working an office job, and no one noticed — in some cases, I’m able to keep my symptoms to myself, which brings me to another misconception: that those who live with schizoaffective disorder, or any severe mental illness, are necessarily unable to live high-functioning lives.
What happened in your life that led to this diagnosis?
I’d been diagnosed with bipolar disorder since I was seventeen, but the psychotic symptoms that started when I was twenty-one began to happen more frequently and last for longer periods of time.
Eventually I woke up and found myself unable to move. For a few days, I could not complete a sentence — it was like the words were dropping out of my body.
I thought my husband was a robot, and that my house had been replaced by an identical house that was not my house. And that’s when my psychiatrist said, “Okay, maybe this should be categorized as schizoaffective disorder.”
How are you treating this?
It took forever, but my mental health team and I finally found a mix of medications that keep my symptoms relatively under control.
In particular, an old-school antipsychotic called Haldol was my so-called “miracle drug,” as I’d tried every atypical antipsychotic out there (called “atypical” because they’re newer, with — for most people — fewer severe side effects). I also work with a counselor who specializes in people with chronic illness, which is helpful because I’m also dealing with late-stage Lyme disease.
Despite my treatment plan, it’s completely likely that I’ll have what they call a “breakthrough” episode at any time — usually brought on by stress. So I try to keep the stress at a minimum, which is, of course, easier said than done.
Can you explain what it feels like when you’re having an episode?
What an episode feels like depends on whether I’m having a psychotic episode, a depressive episode, or a mania.
To describe accurately any single one could take volumes, but I’ll say a sentence for each: completely terrified and confused; to borrow from David Foster Wallace, like a person standing at the window of a burning building while everyone below yells, “Don’t jump!”; like my brain is on fire.
How have the people in your life reacted to your diagnosis and episodes?
Not well, at first. It took over a decade, but now my parents are very supportive, and fairly well-educated. But everyone is always learning, including myself.
Neither my husband nor I had been through one of my lengthy psychotic episodes until 2013, when I was psychotic for nine months! That’s basically a full-term pregnancy. We both had to learn what was okay and what was not okay to do. And my symptoms are likely to change throughout my life, as well.
I think a lot of people would be surprised to know that it’s possible to live a successful, fulfilled life with a serious mental health diagnosis. What do you think are the keys to managing your mental health while attending an Ivy League college or getting a literary agent – both things that you’ve done.
Support is a big one, of course, but honestly, I think I just have a bizarrely iron will when it comes to life thus far, and I’ve learned to develop resilience.
In college, I was hospitalized twice, began having psychotic symptoms, and went for months at a time where I was sleeping 15-20 hours a day — and managed to graduate from Stanford with a 3.99 GPA, albeit miserably.
And I don’t want anyone who might be reading this and struggling with their own issues to therefore look at themselves and expect more of themselves than their health will allow; everyone is different. I personally am amazed that I’ve lived to my thirties, let alone held down jobs or finished graduate school.
What advice would you give to people struggling with serious mental health issues?
I don’t know if this is really advice, but — you’re not alone. Being seriously mentally ill feels like the loneliest thing in the world, and stigma really boosts that feeling, which is why I find it so essential to be as honest as I can on my website and in my advocacy work.
Thank you so much for sharing your story, Esme. Do you guys have any questions for her?