Writers on Mental Health gives a window into real experiences to paint a picture of mental health without taboo, stigma or caricature.
Topics include therapy, medication, depression, anxiety & more. Each installment takes the form of an essay or interview.
Episode VII: An interview with Esme Wang
In this installment, Esme Wang talks schizoaffective disorder, PTSD, Cotard's delusion & Capgras delusion.
I’m here with Esme Wang, a writer and mental health advocate. Esme’s debut novel is coming out through Unnamed Press next year. She’s also been diagnosed with schizoaffective disorder, bipolar type, for three years. Thanks so much for offering your experience, Esme. Let’s start with the time leading up to your diagnosis. What first made you seek help?
I was already a veteran of the mental health system by the time I was diagnosed with schizoaffective disorder, with my first diagnosis being depression and anxiety as a teenager—that classic combination. By the time I was 18, that diagnosis had changed to bipolar disorder. And then when I was almost in my thirties, there were enough signs of psychosis that my psychiatrist was finally like, “All right, we’re going to change your diagnosis.”
You sort of imply a mercurial nature to the diagnoses—am I picking that up correctly? Do you think each diagnoses was a renaming of the same illness, or do you think over time it changed and met different criteria?
It’s funny, isn’t it? Part of my perspective on diagnoses—particularly my sense of how mercurial they are—is influenced by my former job as a researcher. I was a lab manager in the Psychology department at Stanford for a few years, which included responsibilities such as conducting these long, long clinical interviews with potential subjects. And I started to notice how there were so many people out there who met certain criteria, but not enough criteria to meet the formal “requirements” for whatever mental health condition we were trying to study. So the way I see my own mental health condition, or conditions, isn’t so much based on the idea that I was born with certain genetics that then expressed themselves in certain unpleasant ways; instead, I think genetics play a role in a very complicated play. The play is always changing. The plot is hard to follow.
And so each diagnosis is a way of cataloguing that plot, and hopefully finding a way to curb its effects?
I’m always interested, therefore, in people who seem to have the same condition with no changes whatsoever. For example, I developed Complex PTSD two years ago, which I wasn’t expecting at all.
Yeah. I think each diagnosis is a milestone of sorts in that plot, and you try your best to curb its effects or deal with it in whatever way is best for you. Or, I suppose, me.
May I ask what started the PTSD, and also what differentiates Complex PTSD for another type?
The long story about the PTSD includes a history of trauma, including rape when I was a teenager and sexual assault when I was in my 20s. But I think it was triggered when I took a particularly intense self-defense class—it was a class that encouraged actual combat. For example, we practiced over and over again being woken up and attacked by a rapist in ten different ways, and we’d have to respond with the appropriate defense.
Complex PTSD is defined by the fact that the trauma is long-term, rather than a single event.
Do you feel as though the symptoms of PTSD tied into the symptoms of your schizoaffective disorder? How does the latter manifest itself?
That’s an interesting question. The older I get and the more experience I have with these conditions, the more I believe that they’re all interrelated, and perhaps closely tied to trauma. For example, trauma is often linked to dissociation, depersonalization, and derealization. Some, but not all, of my psychotic symptoms are more extreme versions of those. I might feel unreal for a while, or believe that my environment is unreal, and then I might get pushed over the edge—it’s hard to say what exactly causes this to happen—and develop the belief that I’m dead, which is what happened in 2013.
That delusion is called Cotard’s delusion, and it’s fairly rare. I wrote an essay about it that caused some amount of attention.
My psychotic experiences have run the gamut, really. I’ve heard voices. I’ve seen demons flying around when I was trying to get to class. Lately, the psychosis seems to be more closely linked to delusions and paranoia.
How helpful have you found the diagnoses then? Have they been necessary to get the proper medication? Also, I'm curious how long you've been with your current therapist/psychiatrist.
The diagnoses are helpful to me because I’m the kind of person who generally likes labels. I like the idea that I can have a diagnosis, or label, that implies I’m not the lone nut job experiencing the world in this way. They are helpful in getting proper medication, but I’ve been told—after trying literally ever atypical (i.e. modern) antipsychotic on the market, and even some older ones—that I have a “medication-resistant” form of schizoaffective disorder. Right now, I’m trying to get through this PTSD stuff, too—I can’t remember the last time I slept more than four or five hours a night—and medication hasn’t been helping. I’m pretty pro-medication, but the road to finding a combination that works for me has been a hard one.
I’ve been with my current psychiatrist for about three or four years, although it seems much longer than that.
And now I want to shift a bit to your work, and how your mental disposition plays into that. How much of your creative output, do you think, comes from it? Has it been a motivating factor for you, or just a barrier in your life?
I think my mental disposition, as you put it, definitely influences *what* I want to write about. Almost all of my published essays are about mental illness in some way, and my forthcoming novel, The Border of Paradise, also addresses issues of mental illness and suicide. But as far as whether or not my mental health issues drive or impede my creative output—I’d have to say that they impede my work, just as they impede my life in general. I find Kay Redfield Jamison’s work about bipolar disorder and creativity interesting (Touched by Fire), but I also feel a bit icky when the flag is raised for creativity being linked to conditions that can be, and often are, painfully insufferable.
That is definitely the one common theme in all of the interviews and essays up to this point—mental illness as not an impetus of creativity but a barrier for it. In a world where all of your struggles are removed (not that you could even consider yourself in that situation) how do you think your expressional output would change?
Well, I’d probably be an investment banker; sadly, I’m only partially kidding when I say that. I’ve actually never thought about what I would write about if I didn’t have mental health issues. I think I would still write, but perhaps I’d be inclined toward other themes, other topics. Maybe I’d become fascinated by motherhood and the passage of time as children become adults. I don’t know.
Schizoaffective disorder, I think, is the most misunderstood of all of the well-known psychiatric illnesses, because of how it's caricatured in media. Could you provide the details of your specific disorder? When you see it referenced with mood-imbalances and multiple personalities, does it get to you?
Just last week I was out and about, waiting for the light to change, and I heard two women having an argument about the word “schizo.” “Schizo,” one declared, “is different from schizophrenia.” She kept saying this over and over again—never mind that “schizo” doesn’t actually mean anything, and is insulting terminology, besides. There’s schizotypal disorder, schizoaffective disorder, paranoid schizophrenia, and so forth. As you said, “schizo”-anything is portrayed horribly in the media; I’m always waiting when there’s been a mass shooting for the media to start talking about the shooter’s “mental illness” and how it contributed to the massacre. So, to clarify: I describe schizoaffective disorder as a disorderly marriage between bipolar disorder and schizophrenia. And the way that I experience schizoaffective disorder does not affect other people. It affects those close to me, but when I was working full-time, I was consistently experiencing psychosis in the office without anyone noticing, and they’d probably be surprised if they found out that I was seeing nonexistent animals running around by the kitchen.
(To clarify further: I have schizoaffective disorder, bipolar type—it’s possible to have the disorder and have only the depression, or only the mania)
What is the difference between bipolar type and another type?
The “affective” component of “schizoaffective” refers to having some kind of affective problem, which means either bipolar disorder, major depression, or mania. I happen to have the bipolar type.
And the bipolar type is a switch between the other two?
Yes. There are other criteria for schizoaffective disorder as well; it’s possible, for example, to experience psychosis during a major depressive episode, or during mania. Schizoaffective disorder is diagnosed when psychosis occurs outside of a mood episode.
When was the first time you experienced a delusion of any sort? It sounds like it's something you've learned to deal with to the extent of labeling it and moving on with your life.
The first delusion that I experienced is actually one that’s plagued me fairly regularly for years—Capgras delusion. I was in my mid-20s, getting ready to go to graduate school for my MFA, and I realized that everyone in my office (again, I was working in a psychology lab at the time) had been replaced by robot doubles.
Which was awful! And I had to pretend that nothing was wrong. I remember walking to the train station to get home and trying not to look at anyone, because everyone had been replaced by a double, and they were going to harm me if I looked them in the eye.
This is, by the way, a loose interpretation of Capgras. Usually, Capgras is characterized by the “doubles” feeling occurring with close friends and family. But I experienced something close enough to it that it was referred to as Capgras.
And again, putting a name on it, I assume, had a calming effect for you? An acknowledgement that you weren't alone in it?
Also, I think I read something about how Capgras and Cotard’s delusions affect related areas of the brain, which intrigues the former brain imaging researcher in me.
Does any part if you see Capgras and Cotard's delusions (and I guess all of your mental dispositions) as an integral part of yourself? Do you ever
feel like you wouldn't be you without them?
I go back and forth on this issue, and it’s one that I’ve spoken about extensively with friends—who are writers, I might add. Part of me believes that the question isn’t useful; I’m me, I have these conditions, I grew up with them and they’re not going away. But the question of how much to identify with these conditions is an interesting one. I’d say that right now, I believe that they’re, as you said, an integral part of me. It’s been long enough that I see them as a part of me, rather than a lousy, itchy wool coat that I wish I could take off.
Which is also to say that if I did take it off, I’m not sure what would be underneath.
What would be underneath any of us if we removed all of the inconsistencies that made us different from the person next to us?
Probably a little sphere for hunger, for sex, and for sleep. Not too interesting.
Certainly nothing worth writing about.
I keep imagining the Sideways Stories from Wayside School story about the kid with the raincoats? Do you know what I’m talking about? There’s a kid wearing raincoats who comes into the classroom, and he smells terrible. He’s eventually made to take off raincoat after raincoat, and in the end it’s revealed that the “kid” is a dead rat.
Perhaps, underneath our inconsistencies and oddities, we are all dead rats.
Now that's a thought I can end an interview on. Anything else you'd like to add before we call it a day, something we haven't had the chance to touch on?
No, I think that was good. At least, I hope it was good!
Thanks for your time Esme, and your words.
Thank you for having me!