How We Care: Schizophrenia

People living with mental illness have reason for hope and help

Jakarta Globe, Woodwing Importer, Oct 02, 2014

A coalition of mental health advocates will hold a series of events to raise awareness for
schizophrenia and other disorders, starting on Oct. 10 with a public seminar at @america
 in Pacific Place, as well as a candle lighting the same evening at Bunderan HI in Central
Jakarta. (JG Photo/Sylviana Hamdani)

Life is fragile. What we have today — our health, riches and family — may easily be stripped from us in an instant.

Many have watched the 2001 Hollywood blockbuster “A Beautiful Mind,” which tells the true story of John Forbes Nash, a Princeton mathematician whose brilliant career spirals out of control when he begins to experience hallucinations that worsen to the point that he attacked a colleague and nearly injured his wife and child.

Nash was sent to a psychiatric facility where he was diagnosed with schizophrenia. Thereafter, the mathematician’s life yielded to a series of struggles between maintaining his family and career, and giving in to his demons.

Likewise, chemist Poltak Tua Dorens Ambarita’s life changed when he began seeing visions in 2005 while working at a packaging firm in Karawang, West Java.

“I thought [the visions] were a gift from God,” he said.

Poltak became convinced that God had chosen him to be a prominent national leader and marry a certain top celebrity.

Poltak couldn’t stop talking about these thoughts with friends and colleagues. “I couldn’t concentrate at all,” said the 32 year-old. “All I could think about was the visions.”

He then started hearing voices too.

“I went barefoot on the streets just to follow the voices,” he said.

When friends began to realize something was wrong, they subdued the heavy-set Poltak and took him to a mental hospital where nurses restrained him and injected him with tranquilizers.

“I tried to break free, because I believed I wasn’t ill [and] didn’t belong at the mental hospital.”

It took Poltak many years before he could accept that he has to live with schizophrenia, psychotherapy, medication and repeated hospitalizations.

Ash Xyle was a manager at a private company in Jakarta, as well as a loving husband and father of two children, when he started experiencing paranoid schizophrenia — seeing things on his computer screen and hearing whispers behind his back at the office.

“After a week, it started getting really scary,” Xyle said. He took time off work and stayed in his room for three weeks straight.

“I couldn’t sleep, couldn’t talk with anyone,” he said. “I couldn’t make sense of what’s going on.” His wife then took him to a psychiatrist.

“He asked me very carefully whether I know what schizophrenia is,” Xyle recalled. “I said yes, I’ve seen it in the movies. They’re usually killers.”

“[The psychiatrist] said very gently to me, ‘Well, my friend, you have that,’ ” Xyle recalled.

‘Not the end of the world’

“Having schizophrenia is not the end of the world,” Ayu Agung Kusumawardhani, a doctor who chairs the Association of Indonesian Psychiatrists’ (PDSKJI) schizophrenia section, said.

“Schizophrenia is a [mental] illness. It’s not a curse or caused by santet [black magic]. With support from families and friends and proper medication, people with schizophrenia may fully recover and function as normal,” Agung said.

(JG Photo/Sylviana Hamdani)

According to the Ministry of Health’s 2013 Basic Health Research ( Riskesdas ), almost two out of every 1,000 Indonesians report that they live with a serious mental illnesses, including schizophrenia. And that prevalence estimate may be conservative.

“Early detection is the key to treating schizophrenia,” Agung said.

The first signs of schizophrenia usually happen between the ages of 15 and 25. Early symptoms vary from depression, withdrawal from friends and families, hallucinations, delusions to violent agitation.

Some parents, upon seeing these symptoms, think their child may be possessed and bring them to a dukun [spiritual healer] where they undergo rituals that jeopardize their mental and physical health.

“Parents should immediately bring their children to the psychiatrist [when they recognize these symptoms] to get proper treatments,” Agung said, adding that it is important for schizophrenia to be properly diagnosed and treated within the first two years of its onset.

“With immediate diagnosis and [adherence to] treatment, patients may recover fully much sooner,” she said.

Psychiatrists typically treat schizophrenia with a combination of medicines and behavioral remedies that give patients the tools they need to anticipate and deal appropriately with symptoms that remain despite medication.

A significant problem for people living with schizophrenia is adhering to the treatment that doctors prescribe, which may involve daily pills or injections every two or four weeks.

Severe cases may require hospitalization until symptoms are under control.

Support from family and friends plays an important role in assisting patients’ recovery. “It’s important that [patients’ family and friends] understand the disease and accept and love the patient as he or she is,” said Agung.

Part of that support also entails ensuring patients follow the medication prescribed by their psychiatrist.

“The most important thing is hope,” Agung said. “Patients should have the hope that one day they can recover fully and function normally in the society.”

Hope arrives in Indonesia

A new hope is budding for people living with schizophrenia in Indonesia. Earlier this year, the government passed Law 18 on mental health, which affirms the right of every Indonesian to receive treatment for mental health problems that is fair, humane and free of discrimination.

“It’s a great, positive move by the government,” Eka Viora, director of the Ministry of Health’s mental health division, said. “Previously, according to our surveys, about 14 percent of people with serious mental health problems are either abandoned by their families or shackled at home.”

Often, families cannot afford treatment for loved ones with mental illness.

“There is only one mental hospital in each province,” Eka said. “And they’re usually located in the capital cities.”

Under the new law, the Ministry of Health will train general practitioners and nurses at community health clinics ( puskesmas ) in remote areas to recognize and properly treat early symptoms of mental illnesses.

“This way, patients and their families won’t have to travel very far and spend a lot of money to get help,” Eka said.

Currently, doctors and nurses at community health centers would refuse treatment to mentally ill patients, partly on the grounds of being under-resourced and under-trained to deal with such cases.

“They thought that mental illnesses are none of their business,” Eka said. “This is a very wrong misconception. Mental health is actually everybody’s business.”

Indonesia’s new universal health insurance scheme, known as BPJS, also gives new hope for people living with schizophrenia.

Under BPJS, people with schizophrenia are nominally entitled to full medication, treatment and hospitalization for free. Over 127 million people in Indonesia are currently covered by BPJS, Eka said.

However, rollout of the program has been rocky. Patients regularly report problems accessing appropriate care, while doctors complain they have been encumbered by low reimbursement rates and regulations that limit the amount of medication they are allowed to prescribe for chronic diseases to just a few days of pills at a time.

Join the dialogue

To boost awareness of schizophrenia, the Ministry of Health, PDSKJI and Care for the Schizophrenia Community (KPSI) will conduct a series of public campaigns in October and November 2014, among them a public seminar held at @america, in Pacific Place Mall, South Jakarta, on Oct. 10 to observe World Mental Health Day.

The seminar will feature Byron Good of Harvard University, who will speak about research on schizophrenia that he conducted in Yogyakarta. Later that evening, KPSI will conduct a candle lighting ceremony to acknowledge people in Indonesia living with schizophrenia at the Hotel Indonesia traffic circle in Central Jakarta.

“We hope to increase people’s care and awareness for schizophrenics in Indonesia,” KPSI chairman Bagus Utomo said. “We also hope that [people with schizophrenia] will no longer be treated as second-class citizens in this country.”

The campaign will also feature the National Games for Mental Health Rehabilitants ( Porkesremen ) in Singkawang, West Kalimantan, held by the Ministry of Health, from Oct. 29 to Nov. 1. About 400 people, including mental health practitioners and people in rehabilitation from all over Indonesia, will participate.

“This is one of our efforts to eliminate the stigma on people with mental health problems. We want to ensure that when these people are properly treated, they too can achieve much in their lives,” Eka said.

Taking control

Poltak now says his experience proves that schizophrenia can be overcome with treatment, enabling great achievements. He now takes his medicine daily to control his schizophrenia, and practices prayer and meditation to help control his hallucinations.

Poltak says that after staying for several months in a Bandung hospital for treatment, he regained his mental and verbal capabilities by teaching chemistry at a his hometown high school in Medan, North Sumatra.

“Teaching encouraged me to take control of my mind and speech,” Poltak said.

In 2007, Poltak took the test to become a civil servant in the Ministry of Industry. He passed, and was appointed as a chemical analyst in a government-owned industrial research and standardization agency in Manado, North Sulawesi. In 2012, Poltak won a double-degree scholarship at Bandung’s Institute of Technology (ITB) and Chang Yuan Christian University in Taiwan. He recently graduated from his studies with flying colors.

“I would encourage fellow schizophrenics not to lose hope. “Life doesn’t end with schizophrenia. With proper medication and treatment, we all can still have a bright future,” Poltak said.

Ash Xyle agrees. “Schizophrenia is like a hard-to-tame pet The day you tame it, it’s yours. But until then, you have to run around to wipe up the pee and the poo.”