True Story: I Have Schizoaffective Disorder

schizoaffective disorder

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.

You're not alone. You deserve goodness. And you're not broken beyond repair. Click To Tweet

Thank you so much for sharing your story, Esme. Do you guys have any questions for her? 

13 Comments

K.

“You’re not alone. You deserve goodness. And you’re not broken beyond repair.”

After living with severe mental illness for more than 4 years… thank you. <3

Reply
Vanessa

Thank you so much for sharing this. All though I’ve been more outspoken about my illness and even working with an advocacy group, it’s hard. Like, really hard. It feels no one I know gets how exhausting fighting for your health can be.

Lately I’ve been exhausted by it. I want to give up. But the idea of being less than or incapable stings the most. I’m at a point where I have to take a serious look at what I can handle taking on and what I might need to let go. So, thank you so so much for reminding me that my health is most important and to not be too hard on myself. I needed that. <3

Reply
Sarah

I have schizoaffective (depressive type) and this was an amazing read. It’s so easy to feel alone, I’m going on four years. Keep fighting <3

Reply
Lynn

My sister had schizoaffective disorder, though it was not diagnosed until postmortum. One day I’ll have to write a book about her. She was in and out of hospitals much of her life, starting when she was 19 years old. Initially diagnosed with depression, she was later diagnosed with bipolar disorder and then towards the end of her life she was diagnosed with bipolar disorder with psychotic features. Seven days before her discharge from New York Presbyterian Hospital in White Plains, she called me, begging me to bring her pills so that she could end her life. “You’re a doctor” she said, (I am a physician, though not in psychiatry) “you can get hold of pills and you won’t get in trouble and you can bring them to me so that I can end my life”. She pleaded and pleaded with me and called me repeatedly over the next few days. I notified the case worker and social worker immediately. They called me back and said she was not serious. On Monday, June 10, 2014 she was discharged and Tuesday morning she visited my parents, who live on the 17th floor in Brighton Beach. There, in front of both of them, she went out onto the porch balcony, climbed over, and fell to her death. Schizoaffective disorder was just a part of her, but like a cancer it grew until it consumed all of her. I miss her terribly. I lost my best friend.

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Alice

“my brain is on fire” – was the exact same sentence that i said to my doctor… (i have schizoaffective disorder)

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Nick R

Thanks for your article I have the same kind of Schizoaffective disorder with Bipolar symptoms. I used to like manic episodes but then realised how complicated they can be.

I now work in Mental health in Australia and want to study to help my work as a peer support worker. Keep on rolling with the punches…

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Anonymous

my name is Robin I have schizoaffective I had to break downs in my lifetime they were pretty bad I heard voices and I thought demons were going after me then I pray to Jesus and ask himplease let these voices go and the next day I didn’t hear any more voices I thought my prayers were answered then a year later I had another episode they came back hearing voices I ended up going to the hospital where they gave me medication in the medication helped there’s just some side effects I do get anxiety I get panic attacks I get stressed very easily but it’s it’s a lot easier than hearing the voices I don’t hear the voices since I’ve been on the medication it all started when I was 24 years old I am now 41 the first two years of my life I had two episodes but now I’m doing better I don’t hear voices I haven’t heard voices Andover10 years 10 years I’ve not heard forces I haven’t been really depressed but lately I have been having a little anxiety and panic attacks I’m not able to work because of this I am on Social Security disability which now they’re trying to take away from me I have to go to a hearing and see if I can keep my benefits I’m hoping that I will win so I can keep my benefits I also have a learning disability on top of this schizoaffectiveand depression it’s really hard right now I have been really stressed but at least I’m not hearing voices and I hope I never do again

Reply
Julia Bensinger

BREAKTHROUGH STORY FROM SCHIZOPHRENIA

My name is Julia. I am a mother of two. I just want to share my experience with schizophrenia and how I got cured with Herbal medication. I was diagnosed in June 1997, My first symptoms ranges from mood swings to hallucination, odd voices asking me to do so many wrongs things, yeah, Schizophrenia caused me so much pains that I almost took my life but Hope kept me going until the day I stumbled on this blog; curefromschizophrenia.blogspot.com. I knew very little about Schizophrenia and there is no history of it in my family. I struggled with it for years, my life was filled with ups and downs, though I never thought a day like this would come but I it feels good using my experience in a positive manner to advocate for better services for users of HIPPOSIMA herbal medication. Don’t lose hope, believe in yourself, soon you will smile. Feel free to write me for further information. you can also reach the Dr. via the email address on the blog. I wish you best of luck.

Reply

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