With diagnosis and treatment lacking, nonprofit strives to raise awareness of OCD in Japan

A peer-inspired dieting competition triggered the unhealthy lifestyle, but it wasn’t only an eating disorder that haunted Sayaka Hashiba’s late sister.

Hashiba, a 34-year-old Tokyo office worker, said her younger sister’s behavior became visibly erratic when she was around 12 years old.

An athletic, upbeat girl with good grades, she nevertheless began adopting peculiar eating habits, including broccoli-only meals that quickly shredded her weight from 40 kilograms or so to around half of that in a matter of months. She started repeating routine activities, such as climbing up and down staircases and recounting each thing she had done since waking up in the morning.

Meanwhile, the excessive fasting deteriorated her health, and she was hospitalized and diagnosed with anorexia nervosa. Her condition kept her away from school, and her weight remained unstable, bouncing up and down. Her family didn’t know what to make of her odd habits, Hashiba recalled.

Still, her sister was able to maintain a semblance of normality as a young adult, working at izakaya pubs, although her colleagues occasionally complained of her overuse of alcohol disinfectant sprays and oshibori (wet hand towels).

Several years ago, she reached out to Hashiba, telling her via instant messenger that she may have obsessive-compulsive disorder. But Hashiba said she didn’t take her sister’s claim seriously at the time, something she regrets to this day. In September, she died at home from heart failure — nearly two decades of a dangerously unbalanced diet and low caloric intake had taken a toll on her fragile body. She was 31.

Sayaka Hashiba's sister, who suffered from OCD, passed away last year. Hashiba, 34, now volunteers for OCD Japan to raise awareness of the anxiety disorder. | ALEX MARTIN
Sayaka Hashiba’s sister, who suffered from OCD, passed away last year. Hashiba, 34, now volunteers for OCD Japan to raise awareness of the anxiety disorder. | ALEX MARTIN

“The World Health Organization says OCD is nonfatal, but it’s a mental disorder that tortures people for the longest time,” Hashiba said. “And despite the hell my sister must have been going through, none of us in the family figured out what was wrong with her. We left her struggling alone.”

Compared to countries such as the United States, where a growing understanding and acceptance of OCD has led some celebrities to open up about their battle with the anxiety disorder, there is a general lack of awareness regarding the illness in Japan, preventing patients and their families from seeking necessary help and leaving them suffering in silence.

In fact, according to studies, it takes an average of 90 months before those with OCD visit a medical institution in Japan — enough time to complicate symptoms and delay treatment. In Hashiba’s sister’s case, she was diagnosed with OCD only nine days before her death.

“My sister used to say she wanted to do something, anything, that could help others,” said Hashiba, who now volunteers for OCD Japan, a nonprofit led by experts offering advice on how to tackle the disorder. “I know it’s too late now and that nothing I can do will bring her back. Still, I want to believe she would be happy if I worked to raise awareness of the illness that took her life.”

OCD was once ranked by the WHO among the top 10 most disabling illnesses in terms of lost income and decreased quality of life. The organization also lists anxiety disorders, including OCD, as the sixth largest contributor to nonfatal health loss globally.

Despite the extreme distress the disorder can provoke, the condition is often misunderstood and is even used as an adjective for being meticulous or organized.

In Japan, the word keppekishō is used as a blanket term to describe people who are over-particular about cleanliness, obscuring and downplaying what may be far more serious than mere fastidiousness.

The U.S.-based National Institute of Mental Health, the largest research organization in the world specializing in mental illness, defines OCD as a common, chronic and long-lasting disorder in which a person has uncontrollable, recurring thoughts and behaviors that he or she feels the urge to repeat over and over. These include obsessions, such as fear of germs or contamination and having things symmetrical or in perfect order, as well as compulsions including excessive cleaning, hand washing, compulsive counting and repeatedly checking on things — all symptoms Hashiba’s sister checked off at one point or another.

And while no comprehensive figures are available, around 1 in 50 to 1 in 100 people, or roughly over 1 million nationwide, are thought to have OCD, said Ayako Kanie, a psychiatrist at the National Center for Cognitive Behavior Therapy and Research and a member of OCD Japan.

Symptoms typically begin during adolescence, and there appears to be a genetic component involved as well as psychological factors. “People with OCD may also be diagnosed with other disorders including depression and anorexia,” Kanie said. “Some OCD patients also exhibit a strong aversion toward eating certain foodstuffs, such as products using chemicals, which can lead to excessive weight loss.”

According to the International OCD Foundation, the most effective treatments for the condition are cognitive behavioral therapy, with or without medication. More specifically, the organization says a type of CBT called exposure and response prevention has the strongest evidence supporting its use in the treatment of the disorder, while a class of medications called serotonin re-uptake inhibitors are effective.

“The Exposure in ERP refers to exposing yourself to the thoughts, images, objects and situations that make you anxious and/or start your obsessions,” the International OCD Foundation says on its website. “While the Response Prevention part of ERP refers to making a choice not to do a compulsive behavior once the anxiety or obsessions have been ‘triggered.’”

Kanie said that such heightened anxiety typically recedes in 30 minutes or so, a period that, once successfully overcome, gives patients confidence over time.

“For example, the treatment will involve patients with an aversion to germs being asked to touch something dirty and then restraining themselves from washing their hands.”

However, the process requires the supervision of trained professionals and the cooperation of family members and others close to patients, Kanie said, options that may not be available for all depending on personal circumstances.

While the method is thought to alleviate symptoms in around 70 percent of cases, there are not enough trained therapists, said Noriko Nakayama, a clinical psychologist and a member of OCD Japan.

“While patients can be diagnosed with OCD at psychiatry clinics and be prescribed with antidepressants, whether they provide CBT depends,” she said. That is one reason her organization is educating medical professionals on how to conduct the therapy.

On June 2, Hashiba and members of OCD Japan organized their first OCD Walk, an International OCD Foundation-backed awareness and advocacy event that originated in 2013 and now takes place in many cities across the U.S. The event gathered around 70 participants, who marched through the bustling shopping district of Shibuya toward Yoyogi Park as they played music from speakers and held up banners and flags.

Participants of the OCD Walk march down the streets of Tokyo on June 2. | ALEX MARTIN
Participants of the OCD Walk march down the streets of Tokyo on June 2. | ALEX MARTIN

A 52-year-old reporter at a major newspaper covering the event, who asked to remain anonymous, said he suffered from OCD.

“It started in middle school when I began excessively double-checking if doors were closed,” he said. The symptoms receded for some time but resurfaced a couple of years after he began working. He would worry about being contaminated by germs in toilets, and his condition worsened after he was transferred to Tokyo, where the overcrowded city caused him to become a social recluse, or hikikomori.

“When it was really bad, I would spend an hour washing my hands and two hours in the bathtub,” he said.

His wife recommended he receive professional counseling and accompanied him to therapy sessions. Coupled with medication, his condition gradually improved to the point he could go back to work.

“I still stay away from public bathrooms in train stations and fret over whether I stepped on someone’s spit,” he said. “But I’ve learned to live and deal with these situations.”

For Hashiba, the walk was just the start in what she considers to be her mission to spread the word about OCD.

She’s often flooded with countless memories of her little sister, about how she was an expert skier as a child or how she would be the first to comfort Hashiba when she was feeling down.

“She was a strong, cheerful woman who never let her struggles take the best of her,” she said, while showing photographs of her sister stored on her smartphone.

“Discussing mental health is often taboo in Japan, but that needs to change for the sake of those who are suffering.”

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