As ordinary people, we all suffer from poor mental health from time to time.
Stress, trauma, relationship woes, unemployment, disease, substance abuse, poor sleep, etc – these are all contributing factors, although some people may be more deeply affected by certain elements than others.
According to the World Health Organization (WHO), mental health includes our emotional, psychological and social well-being.
It affects how we think, feel and act, and helps determine how we handle stress, relate to others, and make healthy choices.
While the development of some mental health problems may be influenced by our genes, researchers haven’t found any specific genes that definitely cause mental health problems.
Mental health vs mental illness
Although the terms are often used interchangeably, poor mental health and mental illness are not the same.
A mental illness is an illness the affects that way people think, feel, behave or interact with others.
These can include depression, anxiety, bipolar disorder or schizophrenia.
“Our mental health literacy in the country is still very low because of a lack of understanding,” says Malaysian Psychiatric Association (MPA) president Dr Hazli Zakaria.
“Someone with poor sleep and low mood cannot be labelled as having a mental illness.
“When we don’t know much, we try to run away or avoid the issue.
“For example, when we didn’t know about HIV (Human Immunodeficiency Virus) and AIDS (Acquired Immunodeficiency Syndrome), we stigmatised those patients and put them away instead of helping them towards the right pathway to recovery.”
Our culture is such that we underestimate mental illnesses and most of the government’s budget allocation is pumped into treating physical illnesses such as ischaemic heart disease.
He says: “Sometimes, we attribute certain behaviour, such as someone acting up, as an attitude problem and think it is not important.
“Take panic attacks as an example – people might say it isn’t going to kill you.
“But I can tell you that the severity or experience of having a panic attack is as bad as, or worse than, someone having a heart attack.
“The one who has a panic attack will reach the clinic faster than the one who has a heart attack because he thinks he is going to die.”
Increasingly common
According to consultant psychiatrist Datin Dr Riana Abdul Rahim, our incidence of mental health issues – and not necessarily mental illness – has risen from 10.7% in 1996 to 29.2% in 2015 (almost threefold), while 500,000 adults suffer from depression.
“It’s becoming more common, and it’s likely that every person will know at least one other person with mental illness in his or her lifetime.
“The 2015 National Health Morbidity Survey (NHMS) cites that one in three adults, or approximately 29%, suffer from mental health problems, with many more potentially underdiagnosed, while 12% of children have also been detected with this,” says the psychiatrist in charge of Mentari KL, the Health Ministry’s Community Mental Health Centre.
Unsurprisingly, the Covid-19 pandemic has further exacerbated matters.
A 2021 study published in the PLOS One journal showed that symptoms such as depression (59.2%), anxiety (55.1%) and stress (30.6%) were detected among the 1,163 Malaysian adults surveyed.
Although the number of Covid-19 cases during the data collection period was relatively low, there was a continuous increase in the percentage of respondents with depressive, anxious and stress symptoms, implying a cumulative mental health burden.
Dr Riana adds: “With such escalating numbers, mental health is expected to be the second most common health problem affecting Malaysians after heart disease.
“It also poses a national burden as it impedes productivity, with economic costs estimated to be about RM14.5 billion.”
Helping the helpers
Patients aside, those who bear the brunt of the disease burden are their caregivers.
In the process of looking after mental health patients, caregivers often neglect their own physical, emotional and mental health, and ironically, this puts themselves at risk of developing mental health problems.
A lot of caregivers tend to blame themselves when their loved one suffers from mental illness, but the cause of mental illness is multifactorial.
Psychiatrist Dr Firdaus Abdul Gani says: “The main cause is due to the imbalances in the chemical messages in the brain, which can give rise to a lot of problems.
“In addition, when you have an abnormal secretion of hormones during pregnancy or after delivery, prolonged stress, or brain damage due to an injury or infection, it can lead to mental illness.
“Some risk factors such as genetics are not modifiable.”
The experts were speaking at the recent launch of Circle of Hope, a caregiver support initiative, which is a collaboration between the MPA, the Health Ministry and Janssen Pharmaceuticals.
“While sensitising people to- wards mental health patients is crucial to help them return to functionality, we must also not forget the burnout and stress of caregivers who are on this journey,” says the Health Ministry’s national psychiatric services head Dr Salina Abd Aziz.
“We need to care for the caregivers too, and this is the central concept behind the Circle of Hope.
“Making a difference for the patient calls for a 360-degree approach for effective caregiving for all concerned.”
Dr Firdaus, who is the lead for Circle of Hope, explains: “The aim behind this initiative is essentially about empowerment through support and information.
“Modelled along a ‘train the trainer’ concept, it allows caregivers to benefit from a support group to obtain stronger emotional support and the right information from other experts and caregivers who have similar experiences.”
Caregivers play a crucial role in the patient’s recovery, although Dr Hazli points out that having the right family support system is also important.
He says: “If the caregiver or family member is highly emotional, highly critical or overly involved in the patient’s care, this can lead to a poor outcome, but if the caregiver knows how to play her role well, the outcome is better.”
The Circle of Hope aims to upscale caregivers’ knowledge on mental illness and equip them to support the patients’ journey towards rehabilitation and recovery.
It also seeks to develop the caregivers’ basic skills of advocacy, so that they can guide patients back to functionality.
Dr Firdaus says: “To date, we have mounted a team of 120 trainers who will train 4,000 caregivers.
“Within this structure, the Circle of Hope would effectively reach out to some 20,000 family members and mental health patients.”
The training is designed to address the primary impact on family caring for mental health patients, which centre on financial, social, psychological and physical health issues.
It comprises five comprehensive modules: understanding mental illness, the treatment of mental illness, handling crisis, caring for caregivers and recovery in mental illness.
Caregivers are guided to understand cultural context; the myths and misconceptions of psychiatric illness; bio-psychosocial and spiritual components; how to communicate, detect signs and symptoms, and where to seek help; stress management, relaxation techniques and relapse prevention; advocacy; and how to help patients return to work.
A caregiver’s journey
Allan’s (not his real name) sister was diagnosed with schizophrenia more than 30 years ago, and with his parents now ageing, he has taken over the challenging role as main caregiver.
Schizophrenia is a mental illness in which people interpret reality abnormally.
It may result in a combination of hallucinations, delusions, and extremely disordered thinking and behaviour, which impair daily functioning and can be disabling.
Statistics show that schizophrenia affects one in 300 people (0.32%) or 24 million people worldwide.
It can occur at any age.
“My sister goes through a cycle of moods ranging from happy, extremely sad, ‘shopping spree’, and angry and aggressive.
“The first three are very manageable, but when she becomes angry, she turns her back on us, refuses to take medications and gets violent,” he shares.
Managing her is a daunting task, but thanks to decades of experience, support from numerous doctors and the appropriate medications, the family is coping and keeping their spirits up.
He says: “The most important factor is patience.
“My sister is the eldest in the family and there is a bit of ego in her – she doesn’t like her younger siblings to tell her what to do.
“Sometimes, she will refuse to come to the hospital for appointments, so I have to take videos of her behaviour and take it to the doctor as proof or I won’t be able to get the medications.”
Allan has lived with his sister’s condition for so long that he has learnt to acclimatise to her moods.
He knows that she needs someone to constantly talk to, and when she’s aggressive, she needs someone who can control her.
“This life cycle has taught me to be extremely strong, so I put my ego aside.
“ I know some of my friends, relatives and neighbours are fearful of coming to our house because of my sister.
“They can only think of one word – gila – but I’m trying to change that perception,” he says.
He has also taught his kids to understand the disease, what is happening, and to accept the situation instead of being scared.
His advice for fellow caregivers: “You have to be mentally and physically strong.
“Take care of yourself first before you take care of others.
“I’m always looking for a magic solution, but none exists, so we all need a bit of guidance on how to manage the situation better.”
Just a disease
Debunking the misconception that mental illness is a sign of weakness, Dr Hazli says that it is a treatable medical condition that ranges from mild to severe.
“We should treat mental illness the same way we treat other illnesses.
“The problem is that we are afraid to address the symptoms and just label these sick people as gila or ‘otak tak centre’.
“The saying that prevention is better than cure also applies to mental illnesses, so we have to learn to minimise the risk factors.
“Like cancer, early diagnosis and early intervention is best.”
He advises people to refer their family member or loved one to a mental health professional at government or private health centres if they detect abnormal patterns in their feelings, behaviour, thinking and/or changes in their overall physical well-being.
“And if you know any caregivers of mental health patients, share with them about the Circle of Hope and the fact that they need not journey alone on this tough road.
“Let’s play our part as a family member on this mental health journey,” he concludes.
Caregivers who are interested in being trained can contact the nearest Mentari centre to get more information.
The training is free.
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