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It’s difficult to deal with any kind of illness when it hits. But when it affects your emotional and psychological health, it’s often impossible to even describe.
“I think if I were to describe it, it’d be like being in a dream state and not feeling like anything’s real," says Danise Sugita, one of the estimated 57 million Americans who currently suffer from mental illness. "Whether I go through good things or bad things, the feelings of just like this darkness I still have.”
Sugita is fourth-generation Japanese American, and her experience is emblematic of the many issues Asian Americans face when it comes to mental health.
“I think with my family ... it’s a lot of keeping things within the family," Sugita says. "I think just reputation and not wanting to look bad to other people. When I was trying to get help with a psychologist and being on antidepressants, I remember my mom begin really disappointed with that: ‘Why can’t we just try to fix it on our own, why do we need to bring in other people?’"
Sugita spoke with KALW’s Erica Mu, who was awarded a California Endowment Health Journalism fellowship to take a closer look at mental health from an Asian American perspective. Mu has spent the past six months reporting on this topic. She joined KALW’s Ben Trefny in the studio to introduce her series called “Asian American Mental Health: Inside Out.”
BEN TREFNY: So Erica, before we hear your first story, can you first tell us what it was like to take on such a big topic?
ERICA MU: Well, I think the real challenge, especially as a member of the Asian American community, is avoiding stereotypes. The last thing I’d want to do is claim that there is a link between ethnicity and mental health. But what I’ve learned through all my interviews is that culture matters. I think that Joyce Chu, an assistant professor at Palo Alto University, really sums it up best:
JOYCE CHU: Culture makes a difference. Culture makes a difference in the effectiveness of therapy, culture makes a difference in how mental health is experienced, how it should be treated, how it’s expressed. So there’s no question that culture needs to be addressed when you are dealing with mental health treatment, prevention, and assessment.
TREFNY: So the purpose of your fellowship, Erica, follows what Professor Chu is saying, there. But is there an "Asian American" culture? That’s a pretty broad term...
MU: Yes, “Asian American” refers to 50-plus, very diverse sub-groups. So when it comes to mental health, approaching Asian Americans as one group is problematic. For example, if you look at the data for the group as a whole, Asian Americans look really healthy – they register lower rates of depression and overall suicide, and they don’t utilize treatment as much as other ethnic populations. But when you zoom in, it’s clear that the data isn’t reflecting the realities many sectors of this community face.
TREFNY: So can you give us an example?
MU: Sure... I spoke with local psychiatrist Phuong Thuy Le, who says she not only has to take into account that they’re from Vietnam, but also what year they came to this country:
PHUONG THUY LE: If the patient comes in 1975, the first wave of the Vietnamese refugees. I know that now, they’re very well adjusted, very successful, they already are like a mainstream person. So I will understand what they’re going through different than someone arrived in 1980. If you’re aware of the history, people coming to the U.S. between 1980 to 1990 are the people who escaped by boat.
MU: So the Asian American story is very much a story of immigration, even within its unique chapters, and the kind of cultural competency that Dr. Le demonstrates is hard to find in a provider. But even in the best of all cases, many Asian Americans are still either unaware of the resources available, or struggling to access them. So to begin, I want to take you to Union City and introduce you to the Lieu family from Taiwan: Albert, Anne, and their three kids:
Albert Lieu is flipping through photos of his children that he keeps in his wallet. Photo after photo, he describes memories of immigrating to the U.S., along with his children’s high school and college graduations. He pauses on a picture of his second daughter – Jennifer for this story.
Jennifer was born in Taiwan, and seemed perfectly healthy. Albert and his wife Anne remember thinking that she was particularly bright, solving puzzles with ease. Most importantly, they remember her being happy.
But at around age four, Albert and Anne noticed Jennifer would hit her baby brother for no reason and talk to herself. It didn’t seem normal, but it wasn’t something that they worried about until she was around six or seven years old.
“Finally we think it’s getting bad, so I took her to see the doctor,” Anne remembers.
The doctor thought it wasn’t serious. Around the same time, Albert found an engineering job in the U.S., so the family packed up and headed overseas. None of the children knew English, and that combined with her behavioral differences made Jennifer a target for bullies at school, Anne says.
“After that, she closed her world,” says Anne.
Jennifer’s school psychologist contacted Albert and Anne, and said Jennifer was suffering from emotional problems – and hallucinations. Albert remembers noticing them around the same time as well: “One time she said she saw some people came out of the wall, and sometime we can see she’s talking to herself, like talking to somebody you know.”
Albert and Anne had no idea what was going on with their daughter and they didn’t know how to help her.
“Many Asian Americans are not coming in for treatment,” points out Nolan Zane, director of the Asian American Center on Disparities Research at UC Davis – the only national research center that focuses on the mental health issues of Asian Americans. According to Zane, stigma might be one reason why Asian American families tend to wait much longer to access the mental health care system. Therefore, he says, it’s not surprising that those who finally seek care have more problems, and more severe problems.
Even then, Zane says, the forecast for recovery is cloudy.
“[Asian Americans] don't stay as long, and therefore they don’t get the level of care that they should given their mental health problems,” he says. “So even when a person clearly needs mental health treatment, they’re not getting it.”
Albert Lieu sees the same attitude of keeping mental illness in the family in his local Chinese community. But Albert didn’t want to cover up or hide his daughter’s illness.
“I personally feel this is nobody’s fault. Sure, this is a problem. We have to open up, look at the problem, see whether we have a better solution for it,” he says.
Eventually, the Lieu’s were referred to a bilingual psychiatrist, who diagnosed Jennifer as having childhood schizophrenia. Childhood schizophrenia is thought to be much more severe than when it appears in adults. And it’s much more rare, affecting about one in 30 to 50 thousand children ages 13 and under.
The Lieu’s tried to raise Jennifer like a normal child. She even took piano lessons along with her older sister. But all along, she dealt with very severe mental health problems.
Albert Lieu shows a recording a video of Jennifer at a piano recital. Just a year before the recital, he remembers, Jennifer was hospitalized at the age of 14 – and she’d be hospitalized again two times before age 21.
Over the next 20 years, Jennifer would take several medications to manage her condition. And even though the family was on a good insurance plan, many of her psychiatric visits weren’t covered – something clinical psychologist Joyce Chu from Palo Alto University says is a common barrier to care. Chu also points out that there are too few bilingual providers.
“I would go as far to say as they aren’t situated in a way that they meet the ways in which Asian American individuals prefer to seek help,” says Chu.
Despite the financial burden, the Lieu’s stuck with Jennifer’s treatment plan. When Jennifer’s third psychiatrist quit, Anne began calling 1-800 numbers in the Yellow Pages to find a new one. It took three months before the Oakland-based clinic Asian Community Mental Health Services accepted Jennifer as a patient.
Today, Jennifer is 34 years old, and still very dependent her parents for support. Only last year did the Lieu’s figure out how to get Jennifer disability benefits and MediCal coverage. They’ve had so much trouble navigating the system that they founded a Mandarin and Cantonese-language support group for other families like their own.
“Other newcomers – they don’t even speak English at all. Still sometime I don’t quite 100% catch everything, still, even today, even after being here for more than 20 years,” says Albert. He also points out that sharing stories and information can be a huge relief for struggling families.
“We try to help others, whether I feel we can do something to make the whole community better, we’ll do it,” he explains.
These days, Albert and Anne don’t hope for a cure. They just hope that they can make sure Jennifer’s in a safe place when they pass on. Anne is teaching Jennifer how to make fish patties and chicken nuggets. Albert’s working on a campaign to get jobs for Jennifer, and others like her.
“I hope one day she can live by herself and do some things for her. Even it’s not really she can do a lot, but still, could make her happy,” says Anne.
“Yeah I know it’s hard to tell her how we love her, but we just do it. Just like I told her, I say, I do anything that’s under the god. God will see what I did for you. That’s what I think.”
BEN TREFNY: Erica, this is a really heartbreaking story. Is it a typical one?
MU: Not really. Albert and Anne are well-educated – Albert has a PhD and Anne has a Masters – and both speak English fairly well. Around the time that they immigrated here, Albert had a good job and pretty good insurance. But most importantly, as you heard in the story, the Lieu’s really sought help, even when they didn’t know where to look.
TREFNY: So why did you choose to tell their story?
MU: Well, precisely because they were more open about dealing with mental illness, they were more open to talking about it.
You know, I actually had a lot of difficulty finding people who would speak with me about their personal experience. Earlier this year, I’d been in touch with one young Chinese American man who was diagnosed as having bipolar disorder, and he even won an award and scholarship in recognition of how he battled his illness, but he changed his mind about sharing his story on the record after consulting his family – they still don’t want him talking about it.
So yes, the Lieu’s are an anomaly, but they illustrate that even when you’ve got the best case scenario in terms of language, education, and willingness to seek care, you can still struggle to get treatment when you’re not familiar with the system here.
Erica Mu has been reporting on Asian American mental health as part of The California Endowment Health Journalism Fellowships, a program of the University of Southern California's Annenberg School for Communication & Journalism.
If you or a loved one needs support, contact these organizations:
Richmond Area Multi-Services, Inc. (San Francisco):http://www.ramsinc.org/
Asian Community Mental Health Services (Oakland): http://acmhs.org/
Palo Alto University's Gronowski Center (Palo Alto): http://gronowski.paloaltou.edu/
This story originally aired on May 9, 2012.