‘You’re not religious enough’: pain of Indonesia’s mentally ill and the online group bringing sufferers and carers together

As a young man, Yoyon Sukaryono used to beg his parents to take him to a psychiatrist, but they wouldn’t. Although he kept telling them about the voices he was hearing in his head, they were ashamed of his illness and wanted it kept quiet. “They were too embarrassed,” he says. “They didn’t want the neighbours to think I was crazy.” Sukaryono, from Indonesia’s second-largest city Surabaya, recalls how he had to live through most of his secondary school and university years trying to make peace with those voices, eventually accepting them as a “different awareness” and “understanding”. The voices inspired him to write an experimental novel titled Apostolik and create noisy rock music with his band Klepto Opera. In one of his past jobs as a prison guard, he felt the voices gave him the ability to empathise and communicate with convicts. Many of the inmates also had mental problems, but they had no access to medical help. These days, although Sukaryono can see a positive side to his illness, he wishes he had been able to find help sooner. Now in his early 40s, he knows his story is similar to those of many others living with schizophrenia in Indonesia. Though psychiatric treatment in the country is improving, a limited understanding of mental health issues, entrenched social stigma, and a prevalent belief in the supernatural make it a challenge for the country’s mentally ill to seek help or even sympathy. They often have to cope with accusations they are attention-seeking or simply not religious enough to fight off evil spirits and thoughts. Why suicide is a silent crisis for men – and it’s time to talk Using witch doctors to treat mental illness is common in Indonesia. So, too, is a reliance on religious healing to deal with issues. In the past, a form of shackling called pasung (with locks and chains) was often used to restrain mentally ill patients living at home and in rehabilitation houses. The practice was officially banned in 1977 but continued across the country, leading to the government launching a campaign in 2011 to eliminate pasung by 2014. It was not completely successful. Like Sukaryono, many mentally ill people try to seek medical help but they are held back by people close to them. A government report in 2013 found that about 14 million Indonesian citizens aged 15 and over – or 6 per cent of the total population – lived with some form of mental illness, including depression and anxiety. With only limited acceptance and understanding from those around them, many mentally ill Indonesians find both solace and information from online groups such as Komunitas Peduli Skizofrenia Indonesia (KPSI, or Indonesian Community Care for Schizophrenia). First set up as a Yahoo mailing list group in 2001, today the KPSI Facebook page has more than 180,000 followers and over 46,000 members. The group’s founder, Bagus Utomo from Jakarta, created the community to bring together carers and people living with similar mental health conditions as his brother, who had schizophrenia but lacked the information and skills to deal with it. By joining these online communities, Indonesians living with schizophrenia and other forms of mental illness can share and learn from others with similar conditions and experiences. The organisations also provide information about mental health seminars, and reviews and opinions of doctors and psychologists, providing useful direction for members who need it. A hotline is also available for those in need of counselling. “When I started the group, there wasn’t any support groups for people with these issues,” Utomo says. “So when something like that befalls someone in our family, we are absolutely bewildered and feel hopeless. With a support group, we no longer feel alone.” My family does things like hide my medicine, and my husband has even thrown [my pills] in the trash. I’ve been told I lack faith Rani, housewife and freelance translator with schizophrenia Utomo says people rely on his group because of a dire shortage of government assistance for the mentally ill, including the total absence of any psychiatric wards in seven of Indonesia’s 34 provinces (according to 2013 figures); and the absence of trained professionals and suitable medication in public hospitals, community health clinics and treatment centres. Many of the posts on the KPSI Facebook page are harrowing first-person accounts of being stigmatised and amateurishly “diagnosed” by families and friends, whose advice often seems to include a lot of praying. There are also posts that read like confessionals, dripping with frustration and, often, self-destructive thoughts. Fortunately, those posts are always met with sensitive replies from other members – those who know first-hand the emotional turmoil and confusion that comes with mental illness. The community is filled with empathetic members who know what it feels like to be judged. They know the best way to talk to those who simply can’t cope any more, and their comments are often followed by details on how to get professional help. “When I post my grievances in the group, it somehow makes me feel like I have comrades-in-arms, and then I feel less alone,” says Rani (not her real name), a 30-year-old housewife and freelance translator from Solo, in Central Java. Like Sukaryono, Rani says this feeling of belonging helps her face the challenges she has experienced since she was first diagnosed with schizophrenia five years ago. “What’s difficult is facing this stigma that [the conditions] we are diagnosed with aren’t even real illnesses,” she says, “or that people with schizophrenia are mentally weak, or too sensitive, too introverted or too irreligious.” Some members even manage to make close friends through these communities. Aryani, a 30-something primary schoolteacher living with bipolar disorder from Cirebon, in West Java, says she often chats with two people she met on the KPSI page. Aryani says that even simply taking her medication sometimes elicits scoffs and jeers from colleagues who tell her to pray more and to stop being “addicted” to her medicine. This pervasive shaming is why she only wants to use her first name. “My family does things like hide my medicine, and my husband has even thrown [my pills] in the trash,” she says, adding, “I’ve been told I lack faith.” Especially if you are married and have children, it is best to think of it as an extraordinary blessing when [people living with schizophrenia] don’t relapse Budiman Ong, KPSI community member and carer for his wife Not all members of the group are people living with mental illness; many are also carers with a variety of experiences. Budiman Ong, an active member of the KPSI community, has been a carer for his wife, who has schizophrenia, for more than 20 years. He lives with her and their 11-year-old daughter in Palembang, South Sumatra. His experience means he has a lot of wisdom to share. Questions from the group regarding treatment are plentiful. Ong sometimes has to remind fellow members to steer clear of any mystical or occult-type treatments, and understand that religion alone cannot cure mental illness. “If you want to pray or meditate religiously, please do so, but understand that relying solely on those things without medical help will not work,” he says. Like other carers in the group, Ong’s posts are practical and encouraging. He emphasises the importance of “being there” for people living with mental illness. But he also reminds fellow carers to be prepared for the emotional toll it can take on them. Ong says understanding that his wife’s brain had a “different chemical structure” was key to accepting her illness, so now he doesn’t expect her to react to things in the same manner he would. “You will be disappointed if you expect too much from [people living with schizophrenia], especially in terms of providing the usual kind of support or assistance in your life together,” he says. “And especially if you are married and have children, it is best to think of it as an extraordinary blessing when they don’t relapse.” The shared struggles can be challenging for everyone involved, but Ong says the big picture is still a positive one. He views two experiences when he stayed by his wife’s side during her psychiatric treatment – for 30 days in 2001 and 45 days in 2006 – as moments of clarity, not only in his relationship with his wife, but to understand how people living with the same challenging conditions see each other. He recalls how they “cared so much for each other” and how they “help each other in every way”. “It’s not all sad stories,” he says. “There are such happy and touching moments.”