How One Woman Thrives With Schizoaffective Disorder

Ethan, Jake and Heather 

You can find Joan’s books here and learn more about schizoaffective and bipolar disorders.

TRANSCRIPT

For decades Joan Kopczynski has wondered what her life would have been like if her mental illness had never been triggered. 

JOAN: I often wonder what would have happened … I could have lived a normal life.

But her illness caused years of confusion, frustration and depression, until finally at the age of 31 she went to see a psychiatrist.

JOAN: Unless you have a huge stress in your life, it can lie dormant your whole life. I could have lived a normal life without it ever surfacing … Unfortunately I had these huge stressors that brought the illness out.

She learned she had schizoaffective disorder – a rare mental illness that affects three in 1,000 people in the United States according to Yale Medicine. The condition is marked by hallucinations, delusions, and mood disorder symptoms. If it goes untreated, the disorder can make it hard to function. 

This is Joan’s story about how a diagnosis unlocked a mystery.

This is 2 Lives. I’m Laurel Morales.

Constant Connie

Joan Kopczynski is one of 10 children raised in the small town of Cottonwood, Idaho. 

JOAN: I was always a rebellious kid and my parents didn't know how to handle that. I had a lot of problems with my mom. We ended up kind of hurting each other a lot. 11:50 I just felt really alone and, you know, kind of an outsider in my family. 

Joan relied on her sister Connie, who was just 15 months older. They fought over hand me downs and chores but they never stayed mad for long. Here’s Joan’s sister Connie Esser:

CONNIE: Growing up, Joan was a lot of fun. We, in high school, would spend hours upstairs in the bedroom talking about school and dating and boys and whatever else. We'd get the giggles and laugh about stuff…I remember one time she bought a new sweater outfit and it was really cool. And she let me wear it to a dance before she had ever worn it. And I'll never forget that because it was such a generous thing.

Their dad was an electrician and their mom raised the kids and sewed quilts. Joan says she expected everyone to work as hard as she did. 

JOAN: I kind of followed my mom's lead. My early childhood I worked a lot. I had a paper route in the third grade... And then was a janitor at the school and also a janitor for the community hall. Plus I babysat a lot…I babysat regularly for this family who had 10 kids. At night when I put them to bed, I watched the show Mission Impossible. And so that intrigued me. It was full of adventure.

So when a high school teacher told Joan the CIA recruited legal secretaries from a nearby business school, she thought that was her ticket into an exciting life. 

While she went to secretarial school she found room and board with a family very different from her own. Mary Higgins was the director of a mental health clinic. When Joan made macaroni and cheese or cleaned a bathroom, Mary praised her in a way she says she’d never experienced. 

Suspicions

At 20 Joan took a job with the CIA in Washington, DC.

LAUREL: And was it adventurous? Was it what you thought it would be, like Mission Impossible?

JOAN: Well, it was very secretive work. You couldn't tell anybody who you worked for or what you did. There's paranoia that naturally surrounds the intelligence agencies. 

After two years in DC and three overseas, Joan was ready for a change. So she moved to San Francisco. That’s where she met and fell in love with an FBI agent. Six months later Joan found out while she was away he married someone else. She was heartbroken and cried for days. Looking back Joan says this was the first of a series of traumatic episodes that triggered the onset of her illness.

The second occurred a year later when she enrolled in City College. One day she raised her hand to dispute a grade on her assignment. Her professor reluctantly agreed his assistant made a mistake. Afterwards Joan says a strange thing happened: his demeanor toward her changed. 

JOAN: I sat in the front row and my economics professor came, you know, his nose was about an inch, away from mine, know, looked me in the eye and he said, ‘I've been back to Washington, D.C. and this is what is inscribed on the the truth shall set you free. Isn't that right, Ms. Joan?’ You know, he looks me in the eye and is talking to the whole class. I didn't say anything, but I was surprised he said that…I couldn't figure out why he singled me out, because I never told anybody at school that I had worked for the CIA.

A couple days later she says he singled her out again and humiliated her in front of the class talking about the Kinsey report. 

JOAN: He said, ‘what would you say if I asked you how many times a day you orgasmed? What would you say, Miss Joan?’...and everybody burst out laughing and I just died inside. 

Joan thought maybe he was retaliating against her for speaking up about her grade. 

But it was around this time Joan started to become overly suspicious and distrustful of people. Joan’s sister, Connie Esser, says they talked on the phone every couple of weeks and Connie noticed Joan becoming more paranoid. In one conversation Joan talked about her roommates.

CONNIE: In a couple of conversations that we had, she would tell me things like I don't know what's going on…she would tell me that these people were stealing her food. They're stealing my cans of soup. I thought, well, that she would tell me things that just sounded bizarre. And so I encouraged her to come home. 

The third incident that triggered a chemical imbalance involved a car accident. The police officer who showed up to the scene told her he could tell by the tire marks on the road the other car meant to hit hers.

JOAN: So that made me paranoid, but really anybody that was in that position would be paranoid. 

After the accident she took her sister’s advice and packed up to move back to Idaho. Her brother-in-law Roy drove the moving van back to the Northwest.

JOAN: We were going across the Oakland Bay Bridge and he turns to me and he said, ‘who are those people that you worked for?’ He said, ‘are they related to the Trilateral Commission?’ I mean, my brother-in-law is a lumber broker. He has nothing to do with spy stuff you know. 

She was stressed out and sleep deprived and started to believe she couldn’t even trust her brother-in-law. When they stopped at a restaurant on the side of the road, Joan looked around at the men in polyester pants and short sleeved shirts and thought they were all spies. 

JOAN: There were a bunch of men in there with what kind of looked like walkie talkies on their belts.

When they finally arrived back home, Joan moved in with a sister. At this point she had experienced so many losses — her boyfriend she had hoped to marry, her job, her apartment, her independence, her trust in people. She spent most of her time in the spare room in the basement and had trouble getting out of bed. She knew she needed help. 

JOAN: I reached out to a Catholic priest and went to him for counseling. And then this one day he said that he had to prepare for a penance service and it was one of the worst days of my life and I thought, ‘this is it, I gotta talk to somebody, I'm just gonna lose it.’ And so I reached out to Mary Higgins, who was the director of the mental health clinic…So I called her and I said, I need somebody to talk to, and she was very kind. She says, is it painful for you, Joni? And I said, yes. And I was all choked up.

Joan kept thinking about her great aunt who had spent 40 years in what they called an insane asylum. Her death certificate revealed she had schizophrenia. Joan worried if she went to a therapist she would be committed too, but she was desperate.

Mary arranged for a therapist to meet with Joan. At the time therapists rarely gave you a diagnosis but years later Joan obtained her notes and discovered she’d written ‘may be schizophrenic.’ 

‘Waking From A Dream’

Joan wound up finishing her degree at Gonzaga University and moved back to D.C. to become a stockbroker. But life as a stockbroker was more stressful than she could handle. 

Around this time she’d also met a successful author and decided she’d become a writer too.

JOAN: I wanted to write books and make a million dollars off my writing. But, you know, it was kind of crazy because I had this delusion, you know schizoaffective people can either have delusions, paranoia, hallucinations and I had delusions and paranoia. I suffered from those. The delusion I had was I was the world's greatest writer and I had never even written a full manuscript.

Still dealing with depression, she knew she needed help but didn’t feel she could ask her co-workers for a recommendation. So she flipped open the yellow pages.

JOAN: I went to see Dr. Picard and he gave me my diagnosis. I was 31 years old. It was 1985. He diagnosed me. He diagnosed me as Schizoaffective Bipolar and told me to take lithium and a drug called Triliphon.

Lithium is frequently prescribed for depression and Triliphon is an antipsychotic medication. Joan didn’t want to believe she had these disorders but called her sister Connie, who convinced her to try the meds. 

CONNIE: There was no Google. There was no any of that. I didn't know what this stuff was, but I'm sure that I encouraged her to take it because if it would make her feel better, it would be worth it. You know, just try it. And when I think back on that, she was so courageous to do that because it was a scary diagnosis. And such a difficult thing to deal with. And she had very little support.

JOAN: I was surprised and kind of didn't believe him. But I was talking to my sister Connie on the phone… And she said, ‘well, you know, you've had trouble, you know, go ahead and take it. Just, just see if it makes you feel better.’ 

LAUREL: And did it?

JOAN: One of the drugs made me feel normal. I think it was the Trilofon, the antipsychotic drug. 

Within two hours Joan called Connie back to tell her she felt like she’d just woken up from a dream, as if she was in a fog and now she could see things clearly. 

JOAN: Once I found out about that and then I felt like I could do something about it. It's just like fixing a car. Once you find out what part is broken, then you can try to fix it. 

In 1987 she was let go from her stockbroker job due to lack of production. She found work as a telemarketer instead. Then after six years of being on the meds, her psychiatrist weaned her off of Trilafon without warning her of any potential side effects, one of them being mania. 

JOAN: I emptied out my retirement accounts and I ran up my credit cards by buying gifts for people… I bought gifts for a guy that I was in love with. I bought gifts for family members, gifts for other people. That's how I ran up my credit cards. 

In six months Joan racked up $30,000 in credit card debt buying gifts for everyone she knew. Finally, she called her doctor who told her to take Trilafon again because she was experiencing a manic episode. 

JOAN: When I came down from my high, I contacted my friend Jack, and I said, ‘Jack, this is what I've done. I've ruined my life. What do I do now?’ And he said, ‘Joan, go home where people love you. Go back to the Northwest where people love you.’ 

Joan moved to Spokane and wound up having to declare bankruptcy.

JOAN: My sister Connie had a big effect… She helped me become more frugal with my money and she'd say you know I talked to her almost every day and she'd say you know I'd say, ‘well I want to get this.’ ‘You don't need that, you don't need that.’

Joan found a job as an insurance agent. She also found a new psychiatrist who told her her depression was situational, that she didn’t need to be taking lithium.

JOAN: And that was huge. And he tried to wean me off lithium …and that made the world of difference. I never needed it but lithium can ruin your thyroid and damage your kidneys. 

Unfortunately the drug had already damaged her body and Joan still deals with the consequences. 

LAUREL: And today, how do you cope with the schizoaffective disorder? 

JOAN: I still take Triliphon, the antipsychotic that helps with paranoia. To me, it clears up my paranoia like an aspirin clears up a headache. I've always faithfully taken my medicine. I never miss a day. I have been stable, pretty much stable for the past almost 40 years.

When she can’t sleep, she writes and says her paranoia has helped her write spy thrillers. She’s also written a memoir called “Spies, Lies, and Psychosis: Surviving Betrayal, Mania, Depression and Schizoaffective Disorder.” Her doctor also helped her get her sleep under control and she says that’s made a huge difference in how she copes. She also found a constant companion in her dog Coda.

JOAN: I still have trouble with interpersonal relationships. Having a dog the unconditional love that a pet gives you, you know, my dog gets me up every day at four in the morning and wants to go to sleep at nine o'clock at night he wants lights out you know so that has made me get into more of a sleeping routine. 

LAUREL: How has your relationship with Connie been healing for you?

JOAN: I call her my emotional caregiver. You know it has been wonderful just talking to her every day and most of the time it's non-judgmental listening. 

CONNIE: My sister Joan will always be a hero in my eyes. She's had an amazing life. Coping with a mental illness is an incredible challenge. She has been through so many difficult experiences, has never stopped taking her medication. She has worked at numerous jobs and made her own way in life, mostly by herself.

For more information about schizoaffective and bipolar disorders go to our resources page. 

This is 2 Lives. I’m Laurel Morales.