I spent my whole life battling invisible illnesses and not even being aware of them. It took me 16 years to realise I I had been suffering Short Bowel Syndrome, it took me 23 years to realise my flat feet condition is worse than anyone expected, it took me 25 years to realise I was suffering bipolar disorder, it took me 31 years to confirm my heart palpitations condition is due to Tachcardia. I had spent my life being invisible to the public; to them I'm just a young and healthy woman. Even tho that was not the case.
Worst invisible illness I had been battling had been Bipolar Disorder. Mum noticed something was wrong with me when I was little but dad, being the first time parent dismissed her concerns. Eventually they both lived in denial that I actually needed help and by the time I eventually received one at 25, thanks to the intervention of my former partner, I was almost broken beyond repair.
Since young I often suffer heart palpitations and at times I could fainted. Again my family sees it as something runs in the family; both my mum and hers suffers this too - except - mine was worst. I have no idea what is Tachcardia until I went to medical checkout at 31.
Luckily my another invisible illness, Short Bowel Syndrome (SBS) is less severe, and I hope it stays that way. SBS may cause me discomfort at times but with proper diet, especially the one I'm practicing right now, everything should be better for me.
But what people didn't know is I am often in pain, mostly due to my flat feet. While my parents acknowledged my feet are too flat and wide compared to most people, none of us are aware that my flat feet condition can be fixed at a young age. None of us realised I should have been administered special orthopedic shoes to prevent muscles, nerves, and spinal injuries in the long run. Rather we often poke fun at me, unable to find beautiful shoes that will not hurt my feet nor my back in the long run. I spent my whole life having limited choices when it comes to shoes which often irritate me.
Now after the car accident in 2019, the condition has worsened and I'm now required to wear leg brace - and now my choice of shoes becomes *MORE* limited T___T
But with the brace I begin to have new life experiences that I admit I was prepared for.
As I mentioned at the start, I had spent my whole life being invisible.
To the eye of the public, I am a young and healthy young woman. In Malaysian cultures, the young and healthy are expected to give space to the opposites; like seating in public transportations, and even give away a queue line.
There are many times I ended up taking the seat because I was in pain. But I often become conscious, I often feel people giving me looks. Maybe they didn't but it always haunts me. Also in Malaysia people often take photos of people they deemed ineligible to take priority seats in public transportations. I often wondered if they had taken mine and spread it around. I hate the idea - because most of the time people have no idea the story behind it; I had encountered several elderlies and offered them seats but they themselves refused it; either because their stop is closing by or they just want to stand to watch the view. It's unfair that people easily judge and just spread photos without context.
I even covered my conscious of taking priority seats and even drew a comic out of it. There are times I wish my illnesses are at least visible, like burn scars, or maybe easily seen physical congenital defects or even amputations.
Now don't get me wrong, of course I prefer none of them, of course I want to be as normal as possible. But right now not only do I have multiple illnesses but nobody can see them to make my living condition easier because, well, they are all invisible. It's painful. To suffer pain and not be able to utilize disability benefits without feeling conscious or worry.
There was one time someone's car being scratched because he parked at disable people space and walked normally. Turned out he is suffering neuron and joints problems and actually registered as OKU (Orang Kurang Upaya = People with Disabilities (PWD)).
This further makes me conscious in public, but at the same time, despite all these situations I don't really blame the public. There were too many immoral people who took advantage to pretend to suffer invisible illness for their own benefits. And one thing with invisible illness you have no way to show proof because they are, well, again, invisible.
In fact I wasn't aware that everything I'm suffering from are actually disabilities, especially in the American laws. Bipolar falls under mental disability and the rest is congenital.
When I was first diagnosed with bipolar, mum warned me not to let people know because I will need to register as OKU. I didn't take her seriously because, as dad often puts it, she often sensationalized things. But it turned out she was right. In Malaysian law any form of mental illness is required to register as OKU.
But due to discriminations against OKU, especially due to mental illness on job opportunities, I decided against registering. I feel being officially labeled as OKU has more disadvantages and I can live without receiving any benefits from the government.
For a short time after the car accident I went to the rehabilitation center to learn to cope with the pain and walk with leg braces. The doctor actually told me I can live without the brace, or at least not too depend on it as it can weaken my knee and ankle. But he cheekily suggested that I wear it in public to help me get seats; while I can withstand the pain and stand, it is not advisable; in the long run they might further damage my joints and spinal.
Thus I begin my life by wearing braces in public. I begin to wear shorts and short skirts or dresses because the brace is rather uncomfortable beneath the jeans and most of my jeans are skinny :P I did try to wear them outside the jeans but again it's not recommended, the brace is preferably wrapped directly to my leg.
Suddenly I found myself getting attention and outpouring acts of kindness from my surrounding, from strangers especially. During these times, my environment changed and I was initially overwhelmed by it. I'm not used to them. I had always been invisible and dealt with my pain alone but now people lend me their hands.
One time on the way back home I was standing because the train was full. I was wearing a short skirt with my braces visible to everyone. Suddenly an old man stood up and offered me a seat, much to my astonishment. I refused but he insisted and the young lady next to me encouraged me to sit as well. I eventually sat and as I was bewildered with the kindness of the people around me, I suddenly came to the realization that I might be an invalid, I silently sobbed uncontrollably. Having grown up in an environment where people gave away their seats for the old and invalid, I was having a mixture of emotions because an old man just gave away his seat to me, a young woman and the truth is I do want to sit because my leg hurts as hell. By right I do deserve the seat - but not from someone way older than me.
Recently my orthopedist gave me a cool foldable walking stick. While I'm usually ok if I'm moving/walking, my leg would be painful and this is when the walking stick would be useful. I don't mind using my walking stick in public transportation as I do feel comfortable standing with it - but now with leg brace + walking stick = someone *WILL* gave away their seat to me.
I'm still feeling awkward with the situation! So I ended up not using the walking stick in public transportation. Another concern I'm having is despite my condition, I am not officially registered with OKU. I'm always worried if someone challenged me to prove I'm OKU (OKU carries an OKU Card for benefits purposes) and I couldn't show any. With history people pretending to be OKU made me anxious about how they will perceive me. Mum however told me not to be bothered about it; while I might not be OKU (officially), there's many reasons for me to be in braces, like a car accident (and I was indeed in one). I guess I still need time to get used to this situation and learn to feel safe with my current situation.
During the lockdown I was out doing my weekly shopping and I saw something I wanted on the lower shelf. Mind you at that time I was wearing a hinged brace and squatting or bending was not an easy task. As I struggled to bend, a young lady approached me and helped me grab the item. I thanked her and I didn't realise I was weeping, touched by her kindness until she asked me if I'm ok.
Often I've been asked about my leg. One time in the lift at my rental place, I was asked directly by an elderly Chinese man, "Ah moi (young lady), what's wrong with your leg ah?". Taken aback I explained to him about the car accident. He listens attentively before saying as he's leaving, "You take care ah!". For non Malaysian, Chinese elders can be very blunt and sound rude but they are actually very kind and really concerned about the wellbeing of the youths.
One time (again at my rental place lift), a young Malay lady also asked the same question but she was being more polite - "Sorry if I intrude, but may I know what happened to your leg?" and then proceed to help me holding the lift so I can easily carry my items out.
And most recently (again and again at my rental place lift), I was in the lift with a rather handsome, presumably an Arabic man. He suddenly turned to me and said, "I'm sorry about your leg". I was taken aback. I looked at him; he didn't look like giving me a pitiful look, but all I see is warmth and kindness, a look of someone genuinely care. I sheepishly told him I would be fine and thanked him. I admit had I've been single I would had shamelessly ask for his number - and Arabic men is not even my type! AHAHAHAHA!
*Cough Cough* Ignore me.
They said Covid brought out the worst part of people and it's true. But for me I continue to see the kindness out of most people I encountered. One thing I should mention is that I am a Malay of mixed race who is often mistaken for an Indian, or even as a foreigner. At a young age however, my brother and I were bullied for our mixed heritage, but as we got older people become less ignorant and kinder to us (in fact some even think we are exotic).
I am currently working and living in a Chinese area, and yes the Chinese made up 90% or more. Most of these kindness I had been receiving lately are from them, and as I mentioned earlier I even received acts of kindness from foreigners. They didn't see me as Malay, they saw me as a fellow Malaysian, or better as a human being. Bless them all.
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