Improving Schizophrenia Management: A Patient's Call to Care Providers

Kody Green, 29, grew up in a small rural Wisconsin town with about 2000 people, and the only person he knew with a schizoaffective disorder was his mother. Her hallucinations and delusions started when he was in high school, and Green quickly recognized the stigma attached to schizophrenia.

“People were really confused and afraid of her diagnosis because they didn't understand it,” Green told HCPLive.

It wasn’t until Green went off to college that he had his first psychotic break, experiencing hallucinations, delusions, and paranoia that led to his years-long addiction issues. His struggle with addiction ultimately led to him being incarnated. Once he was back home, he sought out a proper schizophrenia diagnosis—a decision that changed his life.

He learned he had undifferentiated schizophrenia, an outdated term used when someone did not fit into the 5 subtypes but experienced symptoms of hallucinations, delusions, disorganized speech, bizarre behavior, reduced emotional expression and speaking, and trouble focusing and decision making.1 Starting medication was a game-changer for him.

“Even now with medication, I still occasionally have symptoms,” Green explained. “It's just a lot more manageable now, and it allows me to…function more like everyone else would.”

Green, a schizophrenia advocate, recovered addict, reformed convict, and motivational speaker, is the season 2 (episodes 1 - 5) host of Unseen and Unheard, a podcast aiming to change the way people view schizophrenia by sharing unfiltered stories of people who live with the disorder. Green has amassed more than 1.3 million followers on TikTok where he shares his personal experiences and schizophrenia coping mechanisms.

Before starting medication, Green dealt with constant hallucinations, delusions, and the inability to process what was happening around him. He struggled to articulate his thoughts and explain what he was going through, making it nearly impossible to maintain relationships and jobs.

Green expressed his gratitude for his mom and wife who stuck by him and helped him through his addiction and his schizophrenia diagnosis. Many friends and family members did not.

“It was very difficult for them as well as me because they were trying to help me manage an illness that I didn't believe I had,” Green said.

It is not uncommon for people with schizophrenia to be in denial of their disorder, especially since a common schizophrenia symptom is anosognosia.

“When you have certain levels of delusion, it becomes difficult to recognize that you are struggling with the illness,” Green said. “It’s unfortunately very common for people living with schizophrenia to not realize that they’re having these symptoms or that anything is wrong with them.”

Common symptoms of schizophrenia

Even on medication, Green still occasionally struggles with hallucinations but no longer experiences delusions or intense paranoia.

“Those were some of the hardest symptoms to live with because if you're delusional… it's hard to even recognize that you're struggling,” he said.

Green also experiences the negative symptoms of schizophrenia, such as aphasia and memory issues. Depending on the day, some symptoms can be worse than others.

Over the years he has found several coping mechanisms, such as a service dog who helps him identify visual hallucinations and technology to check for auditory and visual hallucinations. He had tried many ways to help identify his schizophrenia symptoms

“I've found a lot of success for myself, but I've also seen on social media, a lot of people reach out and [are] really grateful for some of the techniques that I've posted because it's also worked for them and some of the clients…of the medical professionals who follow me,” Green said. “That's been really rewarding to see those coping mechanisms work, not just for me, but for other people living with schizophrenia as well.”

How Healthcare Professionals Could Better Support Patients with Schizophrenia

For many people, it can be a while before they see a psychiatrist or a doctor. Green believes it is important for healthcare professionals to listen to a patient’s experiences without dismissing or immediately sending them to another specialist.

“I think it is super important so that they can get to the root of what the problem is because even some of the symptoms of schizophrenia could present as a different mental illness,” he said. “There's a lot of misdiagnosis for schizophrenia. Sometimes before it gets properly diagnosed, people get a misdiagnosis, which prevents them from getting treatment right away.”

In an interview with HCPLive, Sam Clark, MD, PhD, the founder and CEO of Terran Biosciences, spoke about some of the underrecognized symptoms of schizophrenia and why that might lead to a misdiagnosis. Positive symptoms—hallucinations and delusions—are how schizophrenia is portrayed in the media. However, the most debilitating symptoms are the negative ones—social withdrawal, reduction in affect, the ability to portray emotions, memory loss, and difficulty functioning.

“Sometimes people are initially presenting with more of those negative symptoms…at least in the very early stages,” Clark said. “There can be thoughts, whether it's something like depression… or social withdrawal. It may not be immediately apparent that this is schizophrenia, even when patients present with positive symptoms.”

Misconceptions and Stigma Toward Schizophrenia

Christoph Correll, MD, professor of psychiatry at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and a medical director of the Recognition and Prevention (RAP) program at Zucker Hillside Hospital, shared in an interview common misconceptions people have regarding schizophrenia. For instance, the general public often views individuals with schizophrenia as aggressive and having a split personality.^1,2 Some subcultures may think people with schizophrenia are psychic and are connected with ghosts.

The misconception of schizophrenia can be troubling for people with the disorder. The perception that schizophrenia is interchangeable with a split personality is not true. Rather, functions of the brain dealing with thinking, feeling, acting, and perceiving are not well connected. This can lead people with schizophrenia to misinterpret stimuli and can lead them to hear voices.

As for aggression, this is rare among individuals with schizophrenia. Aggression often stems from fear and not to hurt anyone.

Green said he got lucky with the psychiatrist who diagnosed him and who he has been working with ever since. He had other doctors who did not fully understand his diagnosis and some doctors who told him he “might as well be on disability forever” because he would never reach the stability to hold a job.

“That was really concerning, because I didn't really know anyone with schizophrenia,” Green said. “For a long time, I didn't think that I was going to be able to get to the level of stability that I have today.”

Green said healthcare professionals should not underestimate their patients and should communicate the available treatment options approved by the US Food and Drug Administration (FDA) in recent years.

Treatment Options for Schizophrenia

Schizophrenia treatments approved in the past 10 years include a bi-monthly aripiprazole injection, olanzapine and samidorphan, and cariprazine.^3,4,5

Xanomeline-trospium (KarXT) is awaiting an FDA decision with a Prescription Drug User Fee Act (PDUFA) date on September 26, 2024.⁶ This oral drug, which acts as a dual M1/M4 muscarinic acetylcholine receptor in the central nervous system, would be the first new pharmacological approach to treating schizophrenia since the 1970s.

Some people may think if they improve on the medication, they can stop taking it. Correll explained if a patient happens to miss a dose and sees short-term improvements since some adverse events go away, they may form a perception of “oh, I don’t need the medication. I’m better off without it.’”

With receiving long-acting injectables every 1 – 6 months, patients have less of a chance to stop their medication.

“I think [that is] something where we can help patients not [have] to think about the illness,” Correll said.

Schizophrenia treatments have been shown to lead to fewer hospitalizations, relapses, mortality, and better functioning, ultimately leading to a healthier lifestyle. Unfortunately, patients may be hesitant to seek care for schizophrenia due to the stigma and the perception a schizophrenia person is homeless and has bizarre, disorganized behavior.

“That stigma also can lead to the fact that people don't want to see a psychiatrist, that they feel, ‘Oh my god, I may go crazy and don't even want to confront that.’ Or they see some of these end-stage illness cases where treatment was not effective, and treatment was not given consistently, and they assume ‘I will be like that,’ and then it backfires, and people don't take the treatment that could actually give them a good outcome,” Correll said. “Rather than taking advantage of some of the best treatments we have, they shy away from them. And again, it makes it harder for these treatments later down the road to help them.”

Correll said education campaigns are an effective way to combat the stigma surrounding schizophrenia to help reduce the “fear and the negative mystery around it.” However, it may be more helpful to hear from an actual person with schizophrenia who can relate to their struggles, as Green does online.

Advice for Psychiatrists Treating Schizophrenia

Green emphasized the importance of a psychiatrist having patience with a schizophrenia patient, despite their frustration they are not making any progress, as it takes people with this disorder time to have clarity and communicate their needs.

“My advice is always make sure to maintain communication and build trust because when people do have moments of clarity or the ability to reach out and ask for help, we want to make sure that they weren't pushed away by the doctors or by any medical teams because that's going to prevent them from reaching out in the future if they do have clarity and they want to ask for help,” Green said. “If they've been traumatized or pushed away by a care team or by a doctor, a psychiatrist, it makes it a lot harder to get them back in the door.”

Learn coping mechanisms to manage symptoms of schizophrenia at Green’s TikTok, Instagram, Facebook, and YouTube.

References

1. ^{Pompili, M and Fiorillo, A. Aggression and Impulsivity in Schizophrenia. Psychiatric Times. July 23, 2015. https://www.psychiatrictimes.com/view/aggression-and-impulsivity-schizophrenia. Accessed July 23, 2024.}
2. ^{What is Schizophrenia? American Psychiatric Association. https://www.psychiatry.org/patients-families/schizophrenia/what-is-schizophrenia. Accessed July 23, 2024.}
3. ^{What is Undifferentiated Schizophrenia? Banyan Treatment Centers. https://www.banyanmentalhealth.com/blog/what-is-undifferentiated-schizophrenia/#:~:text=Also%20known%20as%20undifferential%20schizophrenia,Trouble%20focusing%20and%20decision%20making. Accessed July 23, 2024.}
4. ^{Kunzmann, K. FDA Approves Bi-Monthly Aripiprazole Injection for Schizophrenia, Bipolar Disorder. HCPLive. April 28, 2023. https://www.hcplive.com/view/fda-approves-aripiprazole-injection-schizophrenia-bipolar-disorder. Accessed July 23, 2024.}
5. ^{Alicea, J. FDA Approves Olanzapine and Samidorphan for Schizophrenia, Bipolar I Disorder. HCPLive. June 1, 2021. https://www.hcplive.com/view/fda-approves-olanzapine-samidorphan-schizophrenia-bipolar-disorder. Accessed July 23, 2024.}
6. ^{Scott, G. Drug for Schizophrenia, Bipolar Disorder Gets FDA Approval. HCPLive. September 17, 2015. https://www.hcplive.com/view/drug-for-schizophrenia-bipolar-disorder-gets-fda-approval-. Accessed July 23, 2024.}
7. ^{Derman, C. Rishi Kakar, MD: EMERGENT Trials, FDA Accepts Xanomeline-Trospium Application. HCPLive. December 1, 2023. https://www.hcplive.com/view/rishi-kakar-md-emergent-trials-fda-accepts-xanomeline-trospium-application. Accessed July 23, 2024.}