As mental illnesses like anxiety and depression become more accepted in the mainstream, schizophrenics still suffer from arguably the worst amount of stigma.
Though slightly more men than women suffer from schizophrenia, women who are diagnosed with it are the group of mental illness sufferers least likely to get support from their romantic partners. Schizophrenics, regardless of gender, are particularly at risk of homelessness and have a heightened risk of suicide.
Though there's no "cure" for schizophrenia, with proper care, it can be treated.
"Unlike what many think, schizophrenia is not a hopeless condition that dooms those with the condition to a life of tormenting, homelessness, and violence," Russell L. Margolis, M.D., Clinical Director, Johns Hopkins Schizophrenia Center, told Revelist. "With thoughtful and carefully monitored treatment with medicines, psychotherapy to assist the person with schizophrenia in managing symptoms and life challenges, and strong support services for such matters as employment and housing, most people with schizophrenia have the potential for leading satisfying and productive lives."
But these support systems are not always available, especially for women, who already struggle to be "believed" by mental health professionals. Women even wait longer in emergency rooms to be seen.
For a schizophrenic, proper care isn't something that can wait — it can literally mean life or death.
Revelist spoke to four women diagnosed with schizophrenia about how the illness — and stigma — they battle every day.
"Nancy," 39, Oklahoma
Nancy has been experiencing delusions since she was a child.
"When I was 8, the song 'Every Breath You Take' came out," she told Revelist. "I thought the lead singer had gone forward in time, fell in love with adult me, then came back to my time to sing the song about me without anyone knowing who I was."
Then, when she was 11, some girls "came to live in [her] head" — one of them was an imagined older sister named April. In reality, she has only one younger sister.
"They became my friends for the next few years," she said. "I don’t have much information about The Girls as I didn’t write in a journal at that time. I just remember they were always with me, talking to me. I never thought they qualified as 'voices' because they were in my head and I thought you had to hear 'voices' outside your head."
But when she turned 14, April "took" the other girls away.
"I was hurt and confused," Nancy said. "I miss them to this day. I miss them every day."
Throughout high school, Nancy suffered from hallucinations, though at the time she didn't know what they were. "Demons would reach out of shadows and claw at me, she said. "I did at some point think I was going crazy, but I didn’t really know what that meant."
When she was about 17 or 18, Nancy had her second schizophrenic and depressive episodes.
"I was convinced I would fail out of college," she said. I had looked forward to college ever since I had learned about them as a child. I loved school and learning. I was terrified of being depressed forever. I was terrified of asking for help."
Things quickly took a turn for the worse.
"The day before I started college I took 38 tylenol in an attempt to kill myself," Nancy said. "I didn’t take the whole bottle because I started feeling guilty about my roommate finding me."
"When she did come home I had a terrible stomach ache. She got me some crackers, which doctors believe induced vomiting and may have saved my life or at least terrible organ damage. I told no one about the attempt until months later when a doctor asked if I had ever tried to commit suicide."
"My parents were in the room," Nancy said. "I will never forget the look on their faces."
Though she started off school on a "rocky" note, Nancy found a group of friends who helped her greatly. Still, she suffered from periods where she was rendered mute for hours, and eventually ended up in a hospital.
"It was during this time I learned to hate the meds and distrust mental health professionals," Nancy said. "I had a run of bad psychiatrists who talked to my parents and not me despite my age. So, I started telling them what they wanted to hear so I could go back to school and get away from them, which worked."
"I went back to school the next semester and graduated with a BA in English."
For about 15 years, Nancy managed not to relapse, though she still suffered from delusions. She called it her "quiet period."
"I was still having a rough go of it, but I wasn’t having an episode," she said. "I eventually went to graduate school for my Master’s in Library and Information Studies. I got a job at a library, got married, and settled in. My antidepressant alone seemed to be doing the job."
While she still suffered from delusions, she didn't find them stressful.
"I thought I was a witch who could speak to trees. Nice delusions."
But at 33, she suffered a schizophrenic and depressive relapse.
"For one to four hours I would hallucinate constantly and be consumed by bad delusions of entities searching for me to destroy me," Nancy said. "During this time I was only able to speak gibberish. I had never thought to tell my husband about my psychosis, so he was in for quite the shock. He convinced me to get help after several months."
Finally, she was stabilized on antidepressants and antipsychotics and found a doctor who listened to her. She's been under her care for the last five years.
Though she's fought and won many battles with schizophrenia, Nancy feels she can't tell people about it.
"I do feel there is a lot of stigma," she said. "I was pretty excited after my last relapse to learn a coworker had gone to the psych ward before. She went in because an antidepressant made her suicidal."
While they were chatting about people her co-worker had met in the hospital, Nancy realized something disturbing.
"She started talking about the 'really crazy people' and I slowly realized she was talking about schizophrenics. That shut down that conversation pretty fast. I knew I couldn’t tell anyone."
Even Nancy's mother has pressured her to keep her diagnosis under wraps.
"Not even my sister knows," she said.
Still, Nancy believes she can battle the stigma of her illness through writing.
"I hope to combat stigma someday with my memoir," she said. "Maybe if they see a child going through psychosis, they won’t look at the person as dangerous."
"Christine," Ireland
About a year ago, Christine was first diagnosed with schizophrenia, after suffering "a prolonged episode of psychosis" for about three years.
The 26-year-old had just graduated with honors and obtained her masters in Art History, but due to her mental state, she became homeless. Soon after, she was detained under the country's Mental Health Act and involuntarily admitted to a hospital.
"I experienced delusions of persecution, paranoia, ideas of reference," she told Revelist.
"I thought the media/tv/radio/internet had special meaning and messages specifically for me. I believed I was under surveillance. I believed much of humanity was a mind-reader/psychic/spies/wolves. I experienced a dissolve of ego boundaries between self and other, and I was terribly distressed and worried about the number 666. In my country the Police Confidential Hotline is 1800 666 111 and so I developed great paranoia about the fact."
One day in the hospital, Christine had an epiphany.
"I snapped out of the belief that I was being tracked/followed/monitored by the TV," she said. "I was taking Olanzapine/Ativan at the time. Suddenly, it was silence and I emerged out of my psychosis gradually."
Today, Christine takes Abilify and meets with a treatment team once a month.
"I am very much recovered," she said.
Despite increased mental health advocacy in her own country, Christine acknowledges there's still "a great deal of stigma" surrounding schizophrenia, which is partially perpetuated by the media's representation of folks with the illness.
"I have even known schizophrenics who feel [a stigma] about other schizophrenics, ironically," she said. "I think the only way to combat stigma is to meet real people afflicted with the illness and to see they are in large part like anyone else."
"They are ordinary human beings who have had an extraordinary experience."
"Maria," 32, Portland, Oregon
Maria was diagnosed with schizophrenia in summer 2015, after exhibiting what she called "classic symptoms" of schizophrenia.
"[I had] hallucinations — auditory and visual — and delusions. In particular I believed that someone was secretly in love with me and communicating with me through the media."
Maria's romantic delusions are a mental health condition known as erotomania. It typically involves an "average" person believing a famous person is in love with them. So when Maria learned about the suicide of Margaret Mary Ray, another erotomaniac who infamously stalked late night host David Letterman, she decided to get help.
Maria said her current medicine has allowed her to live a happier, healthier life. Still, she worries about how much schizophrenics are discriminated against — and even feared.
"People think schizophrenics are dangerous," she said. "The truth is we're much more likely to hurt ourselves than anyone else. It's also estimated that between 1/4 and 1/2 of people killed by the police are mentally ill (schizophrenic and/or bipolar)."
"Sarah"
Though she'd struggled "for a while," Sarah was officially diagnosed with schizophrenia sometime in winter 2014.
"At first I was resistant to talking about hallucinations and delusions with my doctor," she told Revelist. "But I finally suffered a break that was bad enough to warrant opening up that discussion."
Sarah explained she'd been experiencing both paranoid and grandiose delusions.
"The grandiose delusions aren't exactly 'grand' in that I think I'm the messiah or anything," she said. "Sometimes, I just feel like my actions or thoughts carry special weight that translates to the physical world or that I'm onto some secret that other people are conveniently overlooking."
"The interesting thing about my paranoia is that it usually starts off as something normal, like thinking someone likes my boyfriend. The more I entertain the paranoid thought, the weirder and more complex it gets over time, until I think that girl who likes my boyfriend is possessing the barista to leave secret messages in my coffee."
The year Sarah was officially diagnosed was also when she experienced the worst episode of her life.
"My roommate had moved out because she was anemic and couldn't handle the cold," she said. "I was alone and became more isolated. I lost my reference to the outside world and became afraid to leave my corridor."
"Then it got more difficult for me to identify objects, then I couldn't use my phone because the flashing buttons and sounds scared me, so I threw it in my desk drawer. Then I lost my ability to read for a time (no more than a month). I could barely communicate. I couldn't even organize my things. Since I'm in college, I took winter break to recover. One day, I looked at a sign and realized that I could understand the words, so that's when I started practicing reading again."
"Now I read every day."
Though mental health becomes a more mainstream topic, Sarah feels schizophrenia is still pretty misunderstood.
"I think a lot of people still aren't educated about what it means to have schizophrenia," she told Revelist. "It's a very complicated illness and I can imagine it's difficult for people who don't deal with it to understand.
She said many people dismiss schizophrenics because they assume they can't think critically.
"No one is really born believing the crazy delusions they'll tell you about," Sarah said. "Your brain is feeding you false information because of an illness. This false information is just peppered into your daily life as observations and occurrences that shape your thoughts."
"Just because you're experiencing a delusion or hallucination doesn't mean you aren't a rational person."
Like many schizophrenics, Sarah has faced insurmountable hurdles to get proper treatment.
"I was on Abilify for a month and it sucked," she said. "I felt like my brain was being dulled down and I had terrible joint pain. I'm thinking of going on antipsychotics again, but I'm afraid of being blacklisted by the mental health industry."
"Once you're on antipsychotics, doctors assume that there are times when you won't be grounded in reality. That's a safe assumption, but it's so easy for a schizophrenic person to be involuntarily admitted to a hospital for months on end because they're experiencing a break. The side effects of antipsychotics are also pretty severe and no one really knows how any of these medications work exactly."
Sarah thinks CBD — an extract from cannabis that acts like a natural antipsychotic — could be a viable alternative to mainstream meds.
"The side effects are minimal and there are decades of human studies that show good results. Not only that, but you can self-administer whenever you want."
Due to governmental constraints (i.e. the Controlled Substance Act), many people can't legally access CBD. For Sarah and so many others, it's a devastating blow.
"I wish it were easy for people to be open about being psychotic without having their rights taken away," she said.
