Image: A Schizophrenia episode art piece created by Taylor Rivera in May 2022. (Taylor Rivera)
Students share experience of dealing with the stigma surrounding schizophrenia on campus, and the truth of living with the diagnosis
By Lauren Borchart, Jihwan Paik and Taylor Rivera
Vanessa Robbins, a bachelor of fine arts student, has a long history with mental health conditions. She was diagnosed with depression in high school. In 2014, while attending the University of Minnesota – Crookston, she was diagnosed with bipolar disorder. Recently, just as she began a new program at the Twin Cities campus, doctors told her she has attention deficit hyperactivity disorder, or ADHD.
But the diagnosis she doesn’t talk about to many people – the one with the most stigma, she says – is related to schizophrenia.
“Schizophrenia. That word scares people,” Robbins said. “I don’t tell a lot of people that I’m schizophrenic. Like, people just like they hear the word schizophrenic and automatically they assume you’re crazy.”
Schizophrenia is a complex and complicated condition that affects 2.8 million adults in the U.S. and 24 million worldwide. In other words, 1 in 300 struggle with some type of schizophrenic disorder around the world, according to the National Alliance on Mental Illness (NAMI).
At the University of Minnnesota’s Twin Cities campus, the condition is a much more rare and hidden one. A Data Practices Act request to the University revealed that the Disability Resource Center currently serves 11 students with a schizophrenia diagnosis. Currently, the DRC handles 4,585 students with accommodations, with a little more than 50% of those related to mental health conditions, according to the center’s staff.
Unlike more common mental health diagnoses, such as depression or anxiety, where stigma has been reduced by open conversation, schizophrenia remains a disorder that is rarely discussed and largely misunderstood. The result is fear and stigma, which only adds to the difficulty for those diagnosed with its related conditions.
“One of the biggest misperceptions if you have a diagnosis like schizophrenia is that you’re going to be dangerous, that you’re going to commit an act of violence or that you’re never going to be well,” said Piper Meyer-Kalos, an assistant professor in the department of psychiatry at the University.
But that is not true, Meyer-Kalos said. For some, the stigma around the disorder may be the most difficult obstacle they face.
“They get so well, they go back to really, really hard programs in college and succeed and do very well. They go back to jobs; they live on their own; they get involved in romantic relationships. And that’s the biggest misperception– that those things are no longer possible, because they absolutely are,” Meyer-Kalos said.
The road to Robbins’ schizoaffective disorder with bipolar type diagnosis was a long one. In the same appointment where she was diagnosed with ADHD, she was suspected to have schizoaffective disorder, but that diagnosis was not confirmed. She later switched psychiatrists and received the diagnosis of schizoaffective disorder in 2021.
Meyer-Kalos said the diagnosis process can be difficult for young people in particular because it can often be confused with a variety of different behavioral disorders. It can also be difficult for those patients to accept, she said.
“Most patients want it to be anything else but a serious mental illness like schizophrenia,” she said. “So the stigma that’s associated with an illness like this creates this rationalization process that people can come in with to say they have some other disorder besides schizophrenia”
Some international students say they are also reluctant to openly talk about serious mental health challenges like schizophrenia. “There might be some stigma that follows if I told someone,” said one student from China, who is studying computer science and asked not to be identified. “We are more afraid to talk about our mental health conditions to others because psychiatric hospitals have developed just recently in China, whereas they have been around for many years in the U.S.”
The two telling symptoms of schizophrenia are hallucinations and delusions. Hallucinations can include hearing voices, seeing things or smelling things that others don’t. Delusions are false beliefs that are held, even when the individual is given facts that disprove those beliefs. Both of these symptoms can result in confusion and problems concentrating.
Diagnosing schizophrenia is usually difficult due to the lack of awareness of the illness and its symptoms. There are no lab tests that can prove a diagnosis. Instead, a healthcare provider observes a patient over the course of six months to determine a diagnosis.
A factor in these diagnoses is often family history, however, no single genetic variation is thought to be responsible for the disorder, according to NAMI. But any mental health decline is confusing and frustrating for students with family histories that include the diagnosis, Meyer-Kalos said.
One first-year student at the University of Minnesota, who did not wish to be named, said she had such concerns when she experienced a mental health crisis that ended up being unrelated to schizophrenia.
“I was worried that I might have schizophrenia, and that was actually part of the reason why I sought out services,” she said.
She ended up with a diagnosis other than schizophrenia. “I mean, all mental health issues are severe,” she said. “But that to me felt very, like concerning. I really didn’t want to let that go.”
The concern about a schizophrenia diagnosis is not unwarranted. According to Meyer-Kalos, the condition, and sometimes the side effects of treatments, can interfere with work, school, family relationships and everyday activities.
Robbins graduated with a degree in biology from the Crookston campus in 2019 and said her years there were challenging. When she began her bachelor of fine arts degree on the Twin Cities campus in the spring of 2022, she said, many of those struggles continued.
“I was very depressed so I couldn’t make it to class on time. I got so behind in my assignments, just no motivation to do anything really,” Robbins said. “It’s just hard to balance work, life, mental illness and school all at the same time.”
Robbins sees a therapist, a psychiatrist, and has recently started seeing an Adult Rehabilitative Mental Health Services (ARMHS) worker.
“My ARMHS worker has recently set three goals with me. They are to find my own independent living, find a better paying job that uses skills I am good at, and to manage my anxiety, especially at work,” Robbins said.
She’s sought out all of her resources outside of the University and has found plenty, including her psychiatrist, ARMHS worker, therapist and case manager. She’s also done intensive outpatient programs (IOP), dialectic behavioral therapy (DBT) and cognitive behavioral therapy (CBT).
Robbins said those resources don’t include Boynton Health for therapy, which is aimed at serving students whose mental health needs can be accommodated by its 10 mental health appointments within a 12-month period.
Boynton psychiatrists and therapists will work with students with such specialized conditions “depending on student needs and level of acuity,” Boynton managers said in a statement to AccessU earlier this semester. Students with specialized conditions, such as schizophrenia, often require referral to outside therapists, Boynton said.
“I don’t feel like I could just go to Boynton Health and be like ‘I got schizoaffective disorder, what could you do for me?’” she said. “I feel like in my 27 years of living, I’ve found that certain places have services for me and certain places don’t.”
Currently, the only University resource for those with diagnoses related to schizophrenia is the University’s NAVIGATE program, which is run through the MHealth Fairview clinic off-campus. Robbins has also found help through the Disability Resource Center.
She would like to remove the stigma surrounding her diagnosis, not just on campus but everywhere. “Discrimination is real,” Robbins said. “I’ve been told I can’t come back to a job more than once because of mental health-related reasons. And that is very heartbreaking.”
What she hopes people understand about schizophrenia, most of all, is that they do not need to fear her or anyone with the diagnosis.
“Just because someone has schizophrenia doesn’t make them dangerous, crazy, or a psychopath. Schizophrenics are just like everyone else: human,” Robbins said. “If there is anything I wish the general public would see about people with mental health conditions, it is that we are people too. If the general public could just see the person before the illness/disorder/condition, I think the world would be a lot better place.”