Myth-busting misconceptions about schizophrenia—from families impacted by the condition

Myth-busting misconceptions about schizophrenia—from families impacted by the condition
There are lots of myths about schizophrenia, which leads families and individuals to feel alone, confused, and overwhelmed. We spoke to several families impacted by the condition to learn more about what living with schizophrenia is really like. Read on to hear these families myth-bust common misconceptions about this life-altering condition.
Interviewed by Christina Ren, Certified Genetic Counselor

Myth #1: Parents cause this condition.

Reality: Parents do not cause it.

We heard from parents that they often feel guilt or blame around having a child or family member with schizophrenia. This myth often compounds already present challenges.

From Laura: “Parents do not cause it. Families do not cause it...For example, I had two children. I parented them the exact same way. So why is one healthy, thriving, super successful, creative — everything you hope for your child, and the other one just became drastically ill and died? So it doesn't make sense to blame the parents, even if you as a parent do harbor a lot of that blame and guilt...”

— Laura, mother of Zac, diagnosed with schizophrenia who passed away at age 23

18-year-old Zac and his mother, Laura in 2010 (Photo courtesy of Laura)

Myth #2: It’s a “fixable” condition.

Reality: Schizophrenia is a chronic condition with available management, but no cure.

Everyone we spoke to expressed frustration and sadness about the limitations of available treatments. These limitations only become more acute once someone with schizophrenia becomes an adult. Navigating the medical, legal, and psychological systems has left many family members depleted and devastated.

From Catherine: “Every day we pray for a cure for schizophrenia. But in the meantime, I mean, this most recent episode has been painful for me. I just don't even know how to describe it. It crushed my soul… Without a cure, we need to do everything we can that we know of right now. To keep these folks out of psychosis, deep psychosis.”

 — Catherine, mother of Devin, 29, with schizophrenia

From Lydia: “It's definitely very individualized, and I have read a lot of the struggles or stories that families impacted by schizophrenia have… I guess just understanding the signs and symptoms of when your loved one is starting to slip into psychosis is imperative.”

— Lydia, mother of Anthony, 19, with schizophrenia

From Laura: “I certainly believed that I could fix this for him. If I tried hard enough. There’s a spectrum of schizophrenia disorder: One third of people will have one episode and recover and never have another one. The second third will continue to have episodes, but they'll probably do okay on medicine, you know, lead something of a meaningful life. And then the [last] third—over where my son was—are chronic really debilitated patients and are not going to recover.

Shows like Law and Order depict schizophrenia with characters who just take two pills, and the next day they’d be ready to testify… The reality is our kids sometimes go through 13 or 15 antipsychotics, often things only working marginally well or not at all, before needing to start over. We as Americans want everything fixable...but these are long term, chronic progressive diseases that are not easy to fix.”

— Laura, mother of Zac, diagnosed with schizophrenia who passed away at age 23

Anthony’s senior photos (Photo courtesy of Lydia)

Myth #3: Schizophrenia only affects the person with the condition.

Reality: Schizophrenia affects the entire family. 

Our interviews revealed how much schizophrenia affects the entire family, as it often is a family member or system that serve as caretakers. While these family members do everything they can, they are often left with limited resources to support their loved one with schizophrenia.

From Erinn: “It’s been a very big struggle; it's actually really hard for all of us with Ricky in the house...Sometimes [my other younger kids] would even lock their doors at night when they would go to sleep.”

— Erinn, mother of Ricky, 19, diagnosed with schizophrenia

From Becky: “It's always been a burden on my mind. It's always been. My father died in 2010. And my mother, even before that, was not able to deal with what was going on with my sister. So it's been me. I am the only sibling...I have been managing financial things to make sure that she has money to be taken care of. But for the most part, she has refused any kind of support at all...So for me, it's just been a constant background burden and worry...” 

— Becky, sister of Sylvia, 60, diagnosed with schizoaffective bipolar disorder

From Catherine: “It has been devastating for our family. My husband and I divorced...Managing [my son] and his care has been a challenge. In different ways, [my husband and I] could really no longer support one another. And my other younger son...he struggled.   I think it was very hard for him. He was in college at the time, and he really did try to focus on the positive, but I think it was super hard for him.”

— Catherine, mother of Devin , 29, with schizophrenia

Ricky celebrating Christmas with the rest of the family (Photo courtesy of Erinn)

Myth #4: There is a lot of support for people affected by schizophrenia.

Reality: Many families struggle to get adequate medical and psychological support.

Before, during, and after a diagnosis of schizophrenia, families must navigate complicated medical, legal, and psychological systems. Whether they have a son or sister with schizophrenia, the interviewees expressed that there are not adequate systems of support.

From Catherine: “The system has shown me that there are loopholes and things that can happen where my sick son is going to be unsafe.”

— Catherine, mother of Devin, 29, with schizophrenia

From Becky: “And even so, she does have shelter and food and lives in a fairly nice place, but she has no kind of quality of life because there's nobody supporting her to help her do hobbies or things she'd be interested in. That's the real frustrating thing; our medical system has completely failed these patients. There's nothing for people who don't go willingly seeking care.”

— Becky, sister of Sylvia, 60, diagnosed with schizoaffective bipolar disorder

Devin after his diagnosis of schizophrenia (Photo courtesy of Catherine)
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