Published December 14, 2007
By Christine Joy Ferrer
A middle-aged Filipino woman stood in her bedroom, naked for the third time that day, her body curved slightly to the right from stress. Her face was ashen as she wailed that bugs were crawling up her legs. They had somehow managed to inhabit her room and embed themselves in her clothes. She swatted the vermin away with her hands and stomped the floor trying to kill them. But no matter what she did, she could never be rid of these pests that haunted her. The bugs she saw were all in her mind.
That woman was my mama, who had been diagnosed as a paranoid schizophrenic when I was in high school. Unlike my two-decade-older siblings, remembering my mother for her charm, intelligence and beauty, I’ve known her only as a woman haunted by hallucinations, insistent about locking every door in the house and paranoid that others were trying to steal the money she didn’t have.
And yet, I’m not afraid or ashamed to face it. I’m not afraid to talk about it with others. We’ve sought treatment for my mama, and we take care of her at home. But in my family’s eyes, her illness is not open for discussion and speaking of it, even among us, can be difficult.
Other families in similar situations also have this sentiment. But I can’t get over the power of the cultural and social stigmas surrounding mental illness in America. We openly speak of AIDS, cancer, and other illnesses and fight for their cures, but why not mental illness? America has the resources and the power to improve mental health care and soften the tainted notions that loom over mental disorders but has yet to do so.
By failing to address these attitudes, those who are mentally ill are prevented from seeking the treatment they require, and their families are inhibited from finding the support they need.
Our country controls how we view mental illness—the diagnostic manuals, the clinician training, the journals, and the established psychiatric institutions. We set the bar for how those with mental illness are treated and talked about, and we are teaching the rest of the world to do the same.
If you were to grade the national mental health system, its grade would be no better than a D, found a study conducted by the National Alliance on Mental Illness in 2006. Mental illness causes more disability than any other class of medical illness in America. The mental and physical health of immigrants and their children deteriorates with increasing assimilation to a U.S. lifestyle, a U.S. Center for Disease Control and Prevention survey revealed.
Jails and prisons have become psychiatric treatment facilities for the mentally ill by default. In November, a high-security inmate who stabbed and nearly killed a teenage girl in San Francisco had a documented history of bipolar disorder but was never treated or medicated in prison, reported the SF Chronicle.
Maria’s Madness, Her Family’s Shame
The living room reeks of body odor and two-week old garbage. Piles of dirty laundry mixed with old newspapers and coupons cover the chairs and sofa. Dead strands of hair are scattered on the floor, and dead skin cells pervade the air. Violet’s* mother showers only once every other month. She washes her hands for more than ten minutes and switches the lights on and off just to make sure they’re off.
“Like the movie ‘Gattaca,’ her body particles are everywhere—from her hair and skin,” says Violet, 25. Her mother, Maria*, battles depression and obsessive compulsive disorder. Her family believes Maria is also bipolar. Her one pleasure: ridiculing her daughter. “I’m so much more educated than you,” she’s hissed. She’s also called Violet a demon and a whore, “spreading [her] legs to many dicks.”
“I’m not in denial [about my mom’s illness], but other people are,” says Violet. “They know it’s wrong to ignore but they’re not doing anything because she’s family or they feel sorry [for her] or they’re embarrassed.”
Historically, the role of families in the treatment and recovery of mentally ill relatives has been overlooked, even taken for granted. But they are more than just the people who can answer psychiatrists’ questions. Families function as the primary caregivers, directly affected by those for whom they care. But it can be very difficult for family members and others to see past the stigma of treatment.
Ana’s Addiction, Her Culture’s Discrimination
Elena* spent hours sitting in the same spot by her living room window waiting for her mother, Ana*, to come home.
When she finally arrived after several days, Ana was drugged up on heroin again. She had an evil stare in her eyes, frustrated by the presence of her two daughters. She slipped off her pair of stilettos and without hesitation began beating her girls with its heel. They screamed, horrified. Fighting for their lives, Elena’s older sister flung a punch at her mother’s face while 7-year-old Elena bolted to the phone.
Nearly twenty years later, Ana is no longer addicted to heroin but has been diagnosed with depression, tested positive for Hepatitis C and HIV, and has Crohn’s Disease. But Ana’s addiction to heroin started when Elena was just four years old.
The first time Ana started envisioning apparitions and hearing voices, she checked herself into a mental health clinic. However, the rest of her family remained in denial for years, convinced she had been faking her mental illness.
“Mexican families don’t want to believe anything’s wrong but [want to believe] that everything’s all right,” says Elena. “They think we’ve had to struggle and don’t want people to know we’re weak or that there’s any weakness in our family.”
Our nation lacks cultural sensitivity in the way we approach mental illness, says Dr. Jei Africa, a Filipino clinical psychotherapist. “Stigma is the number one deterrent that prevents many cultures from seeking treatment.”
In the U.S., diverging racial attitudes about mental health care run deep. African Americans are 2.5 times more likely than whites to fear mental health treatment. Overall, 26 percent of whites mention their mental health problems to a friend or relative while only 12 percent of Asian Americans do the same. Mexican Americans born outside the U.S. are less likely to seek treatment than Mexican Americans born here, found a Los Angeles Epidemiologic Catchment Area study. Because of their hesitation to pursue a remedy, Latinos are less likely than whites to receive appropriate care and treatment.
One size cannot fit all. “We must be open to more culturally appropriate ways to deal with illness,” explains Africa. “[We can use] herbal remedies, community and family-based care, group and psychological therapy, traditional healing methods and not just medication.”
Many American psychiatrists believe that mental illness is viewed the same way in all cultures, but they may be wrong. Ethan Watters is a journalist who is currently working on a book about mental illness and cultural differences. “Mental illness is different to different cultures, in how they express their symptoms and their outcomes,” he says. “In another culture paranoid schizophrenia maybe defined by catatonic behavior, going blank, but here in America, it is paranoia—seeing and talking to things and people that aren’t there.”
Samantha’s Denial, Her Son’s Sadness
Imagine being a senior in high school, you’re your parents favorite child, the star at everything you do, top student in your class, and an amazing athlete—with 14 varsity letters: more than one varsity team per season. You’re accepted to Dartmouth College. But then your life is suddenly disturbed, when your mother, who was misdiagnosed as a paranoid schizophrenic, dies from mistreatment.
You never graduate from Dartmouth.
This happened to Edgar’s* mother, Samantha*, who now suffers from severe depression. Edgar’s grandmother passed away during a time when shock therapy was administered and mental institutions existed before President Regan closed them down.
All his mother’s siblings saw psychiatrists after their mother’s death, except for Samantha, who still refuses treatment.
“It’s not what she did but what she didn’t do that showed me that my house was different than most kids,” Edgar says. Samantha couldn’t hold down a steady job, killed time watching movies, and regularly picked her son up and hour or two late from school. She would rarely cook or eat the food she’d buy. Instead it was left to rot on the kitchen counter or spoil in the fridge.
“I spent a lot of time at my friend’s house—come home as late as I could,” he adds.
With the poor understanding of mental health as a “mental issue,” and the tendency to categorize those suffering as “crazy,” patients and their families become reluctant to seek help. When they do, only about one in three receive treatment in any given year that meets minimum standards of care. Paralyzed by fear and shame, many remain in denial, are unaware, or fail to acknowledge their mental illness.
And yet, those who are severely, clinically depressed can still live healthy, happy lives and work stable jobs with proper care and treatment. Over 80 percent of people with schizophrenia can be free of relapses at the end of one year of treatment with antipsychotic drugs combined with family intervention, reported the World Health Organization.
Danielle’s Death, Her Daughter’s Relief
Sometime in the late afternoon, while driving on a New York City freeway, Monica’s* mother, Danielle* flipped out, shouting that she was going to kill herself. Monica, 28, was 8 years old then. As Danielle sped towards a retaining wall, Monica’s younger brother shrieked in terror from the back seat of the car. “If you kill yourself I’m gonna kill myself,” he screamed. “Don’t say that. She might actually kill herself and then you’re gonna have to live up to your word,” said Monica, turning to her brother. She then leaned forward and calmly whispered in her mother’s ear, “Mom, you can kill yourself another time, but you can’t do it now because if you kill yourself now, you’re gonna kill all of us.” Within seconds, her mother steered clear of the barrier and began crying. “I’m sorry,” she said.
Danielle was one of six siblings diagnosed with a mental disorder. She was diagnosed bipolar.
“My mom was really beautiful, good at reading and talking to people. Her personality was magnetic. She was passionate, and knew so much about so many different things,” says Monica. “You’d have to really know her to know exactly who she was. People who really knew her knew she was a disaster.”
Although Monica and her two younger siblings are half-Italian and half-Jewish, they were raised in a Muslim commune for most of their childhood where rules were strict. Her mother didn’t have any control over her life. However, Danielle was able to paint and draw without destroying herself. Once they left the commune, her mind began to unravel more and more.
“Before she got really bad, she spent a lot of time painting, sketching, and sculpting or crying. In her own world, she was unavailable, and it just got more and more frequent to the point where you couldn’t catch her,” says Monica. “She was in and out of mental institutions, [would spend] two weeks sobbing and then the next week she’d be on top of the world.”
The stigma against treatment may be even greater than the stigma against the disorders themselves, with most Americans taking years, even decades, to seek treatment, if they seek treatment at all, according to a survey by the National Comorbidity Survey Replication.
“We think it’s just an illness, that you can get over it,” says the journalist, Watters. “We believe we’re de-stigmatizing it, but it’s its own stigma by medicalizing the problem.” If someone mentally ill goes untreated, it can prove to be dangerous and detrimental to that person and to his or her loved ones.
Dawn was fast approaching, as the street lights continued to illuminate the sidewalk. Danielle awoke her youngest daughter, who was 3 years old, to tell her goodbye. Even though she was so young, she knew her mother was about to execute what she had threatened to do for such a long time. She went back to sleep. Later that morning, a family friend found Danielle’s body in the garage. She had hung herself.
“Life doesn’t get any easier, but we do get better tools,” says Monica of her mother’s death. “But we only get better if we learn to face ourselves—face our experiences.”
My Closure, My Acceptance
So here I am facing my experience. My mama can’t cook for herself or wash her sheets. Every morning after I wake up and before I sleep each night, I give my mama her medication. I change her diapers daily and shower her every Sunday. If ever she relapses and sees the bugs on her blankets or worries that the world has gone into disarray, I pray with her, and she calms down. I don’t consider her a burden. Since she began receiving treatment, she’s more mellow compared to before and less argumentative. I love her for her toothless grin, and she often reassures me I’m “the best in the west.”
Phobia, like a suffocating fog, chokes the families of the mentally ill in America and silences their voices, experiences and questions. Sadly, I feel that I’m the only one willing to share my story, here and now—with my face uncovered, my name unchanged, and my words unblemished.
**Name changed for privacy reasons.