Support, not stigma

Misconceptions over mental illnesses force sufferers to bear with them in silence instead of seeking the help they need. Priya Kulasagaran looks at the overall picture of mental health in Malaysia, and speaks to two individuals about how they manage their conditions

Janice* did not think much of her sleepless nights at first. Working as a high-powered accounts executive in an advertising agency, while caring for a young toddler at home, she put it down to just being slightly stressed out by the demands of her job and life in general.

Soon, those night-time anxieties started creeping into Janice’s day; she would find herself binge eating, feeling severely fatigued, and at some points, crying uncontrollably for no reason at all. The mild sleeplessness morphed into full-blown insomnia, leaving her blanked-out by the time morning rolled around. Still, Janice was reluctant to seek help.

“My husband tried to get me to go see a counsellor, he thought I was having trouble coping with some recent events that had happened. But I brushed him off because it didn’t feel like it was a big deal, other people have gone through worse things,” she says.

As Janice shares details of these “recent events”, it becomes shockingly clear that they were nowhere close to being petty affairs. Aside from having both her parents suddenly pass away just months apart from each other, she also had contend with an incident of sexual assault by one of her former clients.

“Eventually, I did go in to see a doctor because I just couldn’t function well any more, and it was causing a strain on my family. Imagine my shock at being diagnosed with post-traumatic stress disorder (PTSD); I thought that was only something that soldiers got,” she says.

Historically, the term PTSD was initially used to describe the experiences of American soldiers who returned from the Vietnam War. These soldiers continued feeling the torment of being at war, sometimes experiencing intense flashbacks of the battlefield. Recently however, mental health professionals have recognised that other traumatic events, such as accidents and sudden deaths, can give rise to the condition.

In Janice’s case, the flashbacks were not of flying shrapnel and guns, but replays of her sexual assault. This trauma was further coupled with feelings of guilt over the loss of her parents. After three months of therapy, she is now on the road to healing herself.

“I feel like kicking myself for not seeking help earlier!” she says. “But the truth was, even with having my family’s support, I felt weak for feeling that way. I didn’t want anyone to know that I was a ‘mental case’. My employers don’t know anything about this, and neither do a lot of my friends. I’m still so afraid of people treating me differently if they found out.”

According to the Malaysian Health and Morbidity Survey 2015, 29.2% of Malaysians aged 16 and above have some sort of mental disorder — that’s one in three Malaysians. Not only has this number risen from 11.2% from 2006, it appears to be worse in urban settings; the percentage is as high as 39.8% in Kuala Lumpur alone.

Despite this prevalence, as Janice’s story shows, stigma over mental illness has yet to catch up with the severity of the issue.

Defining mental health

Part of the stigma arises from how the general public views mental health issues. More often than not, the phrase conjures up sensational and isolated incidents of individuals committing violent acts such as school shootings or brandishing a parang in the middle of the city’s streets.

“I have to blame the media for playing into this,” says Dr Gurdeep Grewal, a consultant psychiatrist at the private mental health clinic The Mind Faculty. “One guy takes up a gun and shoots at a crowd, it’s splashed on the front-page in full colour. But 600 people dying from gun violence in Chicago (the United States) in just one month, everyone’s okay with that. Statistically, most people with mental disorders are more prone to being victims of violence; they’re taken advantaged and manipulated by so-called ‘sane’ people.

Health Ministry statistics put psychotic disorders, such as schizophrenia, at around 1% of the Malaysian population, or just under 300,000 people. “People with psychotic disorders are generally harmless. It’s more likely that they harm themselves while trying to manage the condition without any help. What is more prevalent are mood and anxiety-related disorders; one in four Malaysians are thought to have anxiety issues,” adds Dr Gurdeep.

The other way stigma rears its ugly head is damning those with more ‘common’ afflictions such as depression as simply being ‘weak’. “Depression is expected to be the second leading cause of disability by 2020 — it’s a serious issue,” says Dr Gurdeep. “Telling someone with crippling depression that they should ‘just cheer up’ is insulting; that’s like telling a person with cancer to just get over their illness.”

Amidst these sort of myths of what mental illnesses are about is the complexity of defining these conditions in the first place. The World Health Organization (WHO) for instance, defines mental health as a “state of well-being in which every individual realises his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.” While this is a well-meaning statement, it does takes take a rather vague view.

Unlike physical ailments, it is hard to find objective measures — such as blood test or a biopsy sample — to formulate a crystal clear diagnosis for mental disorders. Research has shown that genetics does have a part to play, but science has yet to identify a distinct marker or pathology. Environmental and psychological factors, such as one’s personality and family background, has also been shown to contribute to mental health issues. At the same time, others who have undergone similar social upbringing, such as being born into poverty or having experience trauma such as abuse, do not always develop long-term disorders.

This explains why, increasingly, health professionals are moving towards using functionality as a benchmark for diagnosing their patients. “As human beings, we’re supposed to feel joy, anger, anxiety and sadness,” explains Dr Gurdeep. “The issue is when that emotional state becomes dysfunctional and is affecting your every day life. So, it’s normal to feel depressed after a loved one dies, that grief is expected. But if you’re still feeling that way nine months later, you’re struggling to get out of bed or even shower, that’s pathological grief; then you need help and treatment.”

He adds that some people do not even a need a definite diagnosis to seek help. “Some people find relief in knowing what the exact issue is, others don’t find it useful. The thing with diagnostic categories is that a lot of things don’t fit neatly into patterns. But if they’re not coping, there’s no harm getting that support. What I tell my patients is that we don’t have to label you with a disorder, but we need to help you get better,” he says.

Further compounding the issue of tackling mental health is the extent of how culture can shape the way symptoms manifest themselves, as well as influence health-seeking behaviour of those affected by such conditions.

The role of culture

in 2014, a Stanford research team found an interesting difference in the way American patients with schizophrenia experienced their symptoms compared to their Indian and Ghanian counterparts. Publishing their results in the British Journal of Psychiatry, the team’s lead researcher, anthropologist Tanya Lurhmann, reports that all the patients reported a mix of negative and positive experiences with their auditory hallucinations. However, more American patients heard negative and violent voices imploring them to harm themselves. Meanwhile, the Indian and Ghanian patients were more likely to describe their voices as relationships, with many attributing them to family members or gods.

Lurhmann and her co-authors conclude that societal expectations might shape the way people interpreted their symptoms. “The difference seems to be that the Chennai (India) and Accra (Ghana)  participants were more comfortable interpreting their voices as relationships and not as the sign of a violated mind,” they write.

Similarly, Dr Gurdeep says that in Asia, patients tend to develop physical symptoms in response to their psychological issues. “We’re not very good at talking about feelings here; let’s just say that we’re psychologically constipated,” he says. “So then, these psychological burden manifests itself into physical signs like eczema, gastritis, migraines, and muscular pains. I find that people only come to me when they cannot fulfil the demands of their jobs any more, and they realise that the medications solely prescribed for their symptoms is not helping the root cause.”

Another reason he says people come to him much later is due to the perception that mental illness is caused by supernatural elements; be it falling victim to black magic, or being possessed. “But I think this tends to be the issue when an illness is so stigmatised; they would rather go see a bomoh than come and talk to a doctor,” he adds.

Culture can also affect the diagnosis and treatment of mental illnesses, particularly in the way a healthcare system chooses to frame and address the problem. Given the country’s increasing burden of noncommunicable diseases such as cardiovascular diseases and diabetes, it is already apparent that steps are being taken to help patients prevent and manage their conditions. With diabetes for example, aside from receiving the proper medications, patients can also get support in making the lifestyle changes they need to cope with the condition. While these support structures may not be perfect, they are even more lacking when it comes to mental health.

“Ideally, we need a bio-psycho-social approach, for a holistic treatment of mental illnesses,” says Dr Gurdeep. “That means getting the right medication, coupled with therapy and social support. In Malaysia, the current approach tends to be mostly biologically; which means simply throwing pills at the patient. While medication can help, it doesn’t address everything else. We need a lot more recognition and training for other forms of treatment such as therapy and counselling. While Socso (the Social Security Organisation) gives compensation for mental illness, I don’t see any legal provision to assist patients who can and want to get back into the workforce.”

While advocacy for mental health is increasing, through the work of organisations such as Relate Malaysia and their #ImNotAshamed campaign on social media, tackling stigma is still an uphill battle for many. “I didn’t dare take medical leave when I went to see my therapist,” says Janice. “It was better to just burn through my annual leave than admit the truth to my bosses. They might have been understanding, but I just don’t dare take that risk.”

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