I’m the current President of the Mental Illness Awareness and Support Association (MIASA). MIASA was officially recognised as an NGO in September 2017. What makes MIASA different is that we are a patient-led advocacy group. Hence, a majority of people who are in MIASA are patients themselves. When patients themselves speak up, this is when understanding happens, this is where you are going to get better support. Mental illness patients are not crazy, they are not dangerous, they are not violent, they are not lazy. These are all symptoms of the illness. Any illness must be treated – if not, how can you get better, right? With a place like MIASA, you start to realise, “there are so many other people that are like me that are struggling, that are going through this too.” When you see that, that’s when it gives you a sense of strength because you feel that you have a tribe.
“I decided to create MIASA due to my own struggles dealing with my Anxiety disorder. When I was first diagnosed 6 years ago, I didn’t know what mental illnesses were nor where to seek help from. I was career-minded, driven, a perfectionist, and I had a lot on my plate. However, I also wasn’t eating well, sleeping well, and I was juggling work and taking care of two little kids. I was working too hard, my stress levels were high. I was juggling everything without help. So one day, my body collapsed. When your body collapses, your mind collapses – I lost functionality when it happened.
Anxiousness, anxiety, worry, fear, panic – these are all normal emotions. You feel it, I feel it, everyone feels it, right? The difference between those emotions and a person who has an anxiety disorder, is that it’s an illness. When it’s a disorder it means that whatever anxiety, worry, fear that is felt – it is magnified and intensified. You multiply those feelings by 10. When you multiply it, you are not going to be able to function. That’s the difference between an anxious feeling, versus a person who has an Anxiety disorder. It cripples you.
With mental health conditions, you experience physical side effects too. So you have the anxiety, the worry – coupled with the manifestation into physical symptoms. You start having palpitations, your heart/chest tightens, difficulty breathing, you feel like suffocating, you have numbness in your toes, you feel like throwing up, you feel like going to the toilet. But what is horrifying about an anxiety attack experience is that you believe, in that instant, that you’re dying. This is when medication comes in as an aid. My psychiatrist prescribed me with Xanax, which is a benzodiazepine. When you take the medication, the palpitations you experience will slow down, the anxiousness will go away. After my Xanax prescription, I decided to start taking supplements instead. I started with Ashwagandha, which is an herb that works like a tonic to boost your energy. Something in the plant also helps to calm the nerves, so I’ve been told. My other doctor (gynaecologist) who I’ve known now for more than 10 years said I could take that in place of Xanax.
As I was going through my recovery period, my husband encouraged me to go public with my illness because this would help others. If we were to talk about how it was 5-6 years ago, there was not much awareness about mental health. Due to low mental health literacy, people would start to label, judge, and stigmatize. Although the stigma still does exist, there is a greater awareness of mental health today.
What people don’t realise is that taking care of your mental health is an everyday effort. It’s not something that you take care of today then the next 6 days you forget about it. There needs to be a constant effort, especially so if you have an illness.”
For me, I try to stick to my routine as much as possible. I have to make sure I eat on time, and get 6-8 hours of sleep. If I sleep for 6 hours instead of 8, then I will try to take nap in the afternoon. I try to rest as much as possible in between during the day – this is very important. Exercise also really needs to come into the routine. You have to make sure that you set aside time for yourself, as well as time to connect with others. For me, I spend time with my family members.
The theme for this year’s World Mental Health Day is suicide prevention. Suicide is everyone’s business, both here in Malaysia and globally. I personally have not experienced having suicidal thoughts, but I understand that suicidal thoughts can come from various reasons. One example is those who don’t see a way out from their mental illness. When you don’t see the way out, added with the excruciating pain of the illness, it will eventually lead you to thinking of ending your life. What people don’t understand about suicidal thoughts, is that they are intrusive. It’s not something you can say “don’t come”, “please go away”. Another thing that people don’t understand about suicidal thoughts is – it’s a build-up. It’s not like you get up in the morning and suddenly you’re suicidal. There are a lot of underlying issues that leads to it.
If someone comes up to you saying they are having suicidal thoughts, the first thing you should do is to not judge. Secondly, keep an open mind. If someone tells you that they are thinking of ending their life, you can ask them to tell you more, how you can help. Do not invalidate their feelings, because sometimes all they want is for you to hear them out. Don’t listen to judge, don’t listen to advice. Just be there. You must be very patient when you’re helping someone who is suicidal because they are stuck in a rut. It’s very important for you to do your job well. Not because they want to end their life or they are in a weak state, but because it’s a cry for help. We need to understand that they actually want help, not that they want to die. Telling someone that “you’re weak”, “snap out of it”, “try to think positive” – these don’t help. If they’re able to think positive, they would have thought positive already, right?
If you yourself are battling suicidal thoughts, you must know and understand that it can be treated. The suicidal thoughts that you have are not permanent. By getting the help and treatment that you need, they will pass. What I want a person who has suicidal thoughts to know is that we care for them, we love them, and they matter.
There are several places where we can seek help. All psychiatrists here must either be registered with the MOH, MOE, or MOHE. For the underprivileged who are seeking help, they are able to go to any government hospital. You can see a psychiatrist, get treatment and medication, for RM 5. Right now our government has initiated the mySalam insurance for the B40 group, and PeKa B40 for ages 50 and above for mental health screening as well. So they can go to any GP or any private clinics to get a mental health screening. From there, they can be referred to a psychiatrist at a government hospital if needed. Another option would be Mentari, which is a rehab centre for mental illness patients. Mentari has two branches, where people can walk in and do a mental health screening. They can also book an appointment to see a psychiatrist.
For us (MIASA), we are available Monday-Saturday. Anyone can walk in to see a psychiatrist or a spiritual healer. The solution we provide to the public is a holistic solution. It doesn’t matter what religion you are. We do peer support services here as well, so any patient who wants to come to see other patients, they can. We also have circle time once a month – where we sit together and talk about our issues, gain strength and tips from one another, to empower one another. We also offer counselling services. We do a lot of programmes, workshops, forums, as well as having a radio programme on IKIM.fm.
We also help patients with their livelihood as well. What a lot of people don’t know about people with mental health conditions is that they lose their jobs. They lose their jobs because their employers don’t understand their conditions. It’s very difficult to get an MC for a long period of time so that they can obtain treatment before returning to their workplace. And because there is a lack of knowledge among employers and employees, the working environment is not conducive for a person with mental illness. We provide reasonable accommodation for those with physical disabilities. For example, if a person is wheelchair-bound, we would give them a higher desk so that they are able to roll in their wheelchair, or provide a workstation that is closer to the toilet so it’s easier for them to access it. Mental illness on the other hand is not visible to the naked eye.
There is no law that protects mental illness patients. It’s more on a personal basis where you talk to your employer about it. The Person with Disabilities Act 2008 is catered more towards people with physical disabilities, not so much mental disability. Although the United Nations Conventions of Rights of Persons with Disabilities is ratified in Malaysia, it is not enforced.
What we as the public can do is to provide support. The biggest barrier to mental health in Malaysia is the stigma. I think it’s important for everyone to understand that all of us have a role to play, and we all must play our role well. If all of us think that mental illness is not our business, it becomes difficult to reduce the stigma. Instead of judging and labelling, let us understand that everyone struggles. If we are more empathetic and compassionate, I believe people with mental illnesses will be more open in sharing and conveying their struggles.
As we still lack mental health literacy, there is a growing need for psychoeducation in Malaysia. Families also need to provide support towards mental health patients. Not necessarily understanding it, because it’s difficult to understand when you are not going through it yourself. But we can provide support in other ways: accompanying them to see their psychiatrist, helping with house chores, bringing them food to eat, things like that.
We as a society, are partly to be blamed because we are very individualistic. We don’t really want to help. We judge, we label, sometimes our words are sharper than a double-edged sword. We contribute to people dying without realising it. Only when someone kills themselves we start to ponder why. Sometimes, there are even people blaming those who have already committed suicide.
The media has done a very good job in fighting the stigma and prejudice of various issues. When it comes to mental illnesses, I hope the media as a whole will portray the stories of people with mental illness through the depth and richness of their stories as human beings – not just as a diagnosis. The media has the power to challenge the stigma, but they can also contribute to it. Hence, we should all learn to use whatever platform we have responsibly. Otherwise, the stigma will continue.
Photostory by Maxy
Edited by Win Li
Photo by Kelly
