Living with Schizoaffective Disorder: Support for Patients and Caregivers

Driven by its commitment to patients, Teva helps families tell their stories and educates the wider community about the challenges of living with life-changing conditions.

In this forum, Sally, who lives with schizoaffective disorder, and Sophie, Sally's mother and caregiver, share their lived experiences and coping perspectives for patients and caregivers.

Key takeaways:

• Lived experience helps communities better understand serious mental illness
• Continuity of care can support a patient’s treatment plan over time
• Caregivers need support and self-care, not just during awareness months

What is schizoaffective disorder?

A mental health condition, schizoaffective disorder involves a combination of symptoms from schizophrenia, like hallucinations and delusions, and symptoms of mood disorders, such as depression and mania.

Caring for the caregiver

Heather DeMyers, Vice President of Teva’s Innovative Medicines Marketing, paid tribute to the patients and caregivers who navigate both medical and emotional journeys after diagnosis.

Chairing the discussion, Michelle Roberts, Senior Director of Medical Advocacy US, also applauded the patient advocacy organizations that support patient communities and reminded caregivers to prioritize their self-care throughout the year.

“We all know that the person living with the diagnosis is not the only one affected. Loved ones, caregivers, family members, are also impacted.

“Here at Teva, we believe it is critical to listen to all the voices who may be affected by the conditions that we treat. It's an honor to have our speakers with us today to help us learn more about their unique lived experience.”

Meet Sally and Sophie

Sally grew up around serious mental illness. She had a family member with schizoaffective disorder, so she was already aware of the stigma surrounding the condition. After studying at Berkeley and taking her first job, Sally also experienced a descent into psychosis.

“For 10 months,” says Sally, “I believed my life was a hyperreality psychological experiment.”

Her prognosis was not good. “My doctors said you're never going to get married, you're never going to live independently, you're never going to work full time again.” Sally shares.

“But they were wrong, which is great. I live independently; I work full time. I’m not married yet, but I think I can. It's been great to enjoy recovery.”

Sally describes her mother, Sophie, as her “rock.” Sophie had been a caregiver for her own mother, who had a serious mental illness, and for another family member with schizoaffective disorder.

Sophie shares, “By the time Sally's symptoms came out, I recognized them and was able to get help for her quickly.”

Early reaction to the diagnosis

“People always ask what it was like to get diagnosed, but nobody really told me I had schizophrenia or schizoaffective disorder,” says Sally.

“If you’re in psychosis, doctors assume that you can't be communicated with. This is wrong, you can. But I do remember the day I realized I was sick. I suddenly got it. And Mom was there for me. I slept in her bed with her for two weeks because I just couldn’t be alone. But I also remember thinking, I’m going to give recovery a shot.”

Sophie says that working from home helped her when Sally was diagnosed. She could take her to appointments and spend more time with her. Learning more about schizoaffective disorder and how to communicate with someone experiencing psychosis also made a big difference.

Sophie also learned two other important lessons: acceptance and detachment.

“We accept what we can't change, and there's nothing I can change about the course of Sally's illness, so I had to accept that.

“And the other lesson I learned was detachment, which means that while I will always love Sally with all my heart, I recognize that her life is her own. And that my role is to support her independence above all.”

Challenges of daily life with schizoaffective disorder

“My biggest challenge was that I thought my life was a psychological experiment and everyone in it was a paid actor,” says Sally.

“I withdrew from everyone because no one wanted to talk to me about the things I cared about – my imaginary husband, the fact I was going to be president. So, I didn't talk to anyone except my mom.

People in psychosis are still people. We're still capable of giving and receiving love and people can forget that. But my mom never forgot my humanity, no matter how sick I was.

“She found little ways to break through with me. She paid for me to have my hair and nails done; she took me to Disneyland.

“People in psychosis are still people. We're still capable of giving and receiving love, and people can forget that. But my mom never forgot my humanity, no matter how sick I was.”

Treatment experiences (personal perspectives)

Sally’s treatment began with oral antipsychotics, but side effects for her included extreme tiredness. Then she was prescribed a course of long-acting injectable (LAI) medication.

However, after Sally’s health insurance stopped paying for this treatment, she was prescribed oral medication again. Following a deterioration in her condition and several emergency hospitalizations, her insurance coverage for LAIs was reinstated.

“Now I'm starting a new career as an advocate. My condition is a dynamic disability. It waxes and wanes and my keeping it at bay [is supported by] the shots.”

Sophie adds, “Medication is available but is often denied for what are considered cost saving reasons. However, every hospitalization that Sally might have been subjected to would have cost so much more than just giving her the medicine.”

“This is both terrifying and frustrating. Disability is expensive and we both rely on government assistance for our health insurance. So, whenever that's threatened, it brings a lot of anxiety into our family.”

Misconceptions and stigma

“I describe my existence as a Dr. Jekyll/Mr. Hyde situation because when people look at me, they don't think schizophrenia,” says Sally. “And the opposite is also true. When I'm in psychosis in psychiatric settings, the staff assume I'm always like that, I'll never get better.

“So, I would say that while people in psychosis are not capable of some things, we are capable of a lot. For example, when I was in psychosis, I would still have long discussions about American history and politics. I didn't get dumber. I just didn't understand the circumstances of my life.”

Sophie adds, “There are so many misconceptions about schizoaffective disorder, schizophrenia, and serious mental illness, but the one I would focus on is that, for centuries, we've treated people with serious mental illness as if their lives have ended, by institutionalizing them or denying them fundamental rights.”

“And in my experience, as I get to know other families who are dealing with this, that's simply not true. And people with schizophrenia can have meaningful lives, lives that are as valuable to them and their families as anyone else’s,” she says.

“Also, we don't love our children any less than anyone else loves their kids or values them. Our dreams don't go away. They might change, they might look a little different, but we have them, they're still there.”

Why consistent care matters

“There's so much misunderstood about schizophrenia, and one of the things that's misunderstood is that people thrive when they have consistent care. And Sally's been lucky to have a psychiatrist who's worked with her for a long time and advocates for her to get the right medication for her,” says Sophie.

“The other thing is that people used to think that people who are in psychosis couldn't benefit from therapy, but Sally's also been really blessed to have a therapist who has worked with her consistently so that when there is a crisis, she has more support available to her, and that's critical to her thriving too.”

The caregiver role for people with schizoaffective disorder

“My mom’s unconditional love means so much to me,” says Sally.

“When I was in psychosis, some people acted like I couldn't be reached, and that just simply wasn't true. My mom found all these creative ways to reach me. Also, I loved myself less when I got sick, and knowing my mom didn't, helped me regain that self-esteem. It’s the unconditional love that gets us through. There’s the medical recovery, but there's the emotional recovery as well, and my mom was instrumental in both.”

“I looked at other caregivers and sometimes found myself lacking,” says Sophie. “I'm introverted. I'm shy. I really like science. I'm very geeky, but I found that there's a place for people like me, too. And I think that we're all needed because we are a community. And it takes all kinds of people to make a community.

“So, I would just say to caregivers, you can't do everything, but I bet you do something really well.”

Self-care for caregivers

“Don’t forget your self-care or your own sense of self and identity,” says Sally. “I've seen so many mothers make schizophrenia advocacy and schizophrenia caregiving their entire lives. And that instinct is beautiful, but I worry that they're not as mentally healthy as they could otherwise be.

I, like so many caregivers, isolated for a time. My communication community became very small. I didn't always make time for myself. I would just say, you matter too.

“I’ve started talking about my situation recently and addressing some of the poor outcomes for caregivers because I think that we can't really start addressing this until we confront it,” says Sophie.

“I, like so many caregivers, isolated for a time. My communication community became very small. I didn't always make time for myself. And I started using substances. So I've been sober for about two years now, and that's really critical to my self-care,” she admits.

“I'm talking about it because I'm not the only one. The rates of addiction for caregivers are super high. Our mental health and relationships suffer and financially it's a real burden. I don't have any solutions, but it gives my life purpose and meaning to be vulnerable and open about it.”

How Teva supports patients, caregivers, and communities

“The last 10 years has been really key in our understanding of schizophrenia, and the promise of more individualized treatments is huge,” says Sophie. “So, I deeply appreciate everyone who is devoting their lives to research and education because it shocks me how little education even some clinicians have. Everything you're doing to educate people is deeply appreciated.”

Sally adds: “When I think of advocacy, I think of medical advocacy, policy advocacy, and culture advocacy. And I know Teva does a lot of medical drug development, which is great, and also some policy work, which is really important to me - because my medicine is really expensive, and it helps me.”

“When it comes to the culture, I think you have the chance to start a conversation about de-stigmatizing serious mental illness. And that is a great position to be in to help patients and you’ve already done great work in all three areas so thank you.”

The work continues

“It’s our pleasure and honor to continue this work,” says Michelle Roberts in her closing comments. “You’re the reason we get up. We’re in this and we’re proud to be in it.”

“Keeping humanity at the heart of our work matters,” Heather DeMyers adds. “Today we’ve heard powerful insights on supporting caregivers, showing empathy, and recognizing the hope and resilience that exist alongside the challenges of living with a medical condition.

“We’ve also been reminded that there’s still more to do - and that drives us to show up every day, motivated by the communities we serve.”

FAQs: Schizoaffective Disorder