[Laughter] I always look normal unless I tell people that I'm sick. Otherwise my symptoms are not very obvious. I'm forty-six years old and I suffer from an autoimmune neuromuscular disease that causes weakness to all parts of my muscles. That can be my limbs (and it can also affect my) swallowing and breathing. It's called myasthenia gravis. It's the kind of question that comes from a society that judges people based on their appearance. So, when people ask me that most of the time, the first reaction I give them is a deadpan stare. Autoimmune disease is a type of disease where your own immune system is turning against you. Somehow it targets your own organs (and treats them) as enemies. I have multiple autoimmune diseases actually. First is primary sclerosing cholangitis autoimmune hepatitis and ulcerative colitis where my immune system attacks my colon, liver and bile ducts. I was thirty-eight two years ago when I was diagnosed with autoimmune encephalitis. It's an autoimmune condition which attacks the brain and the result is that I now suffer from short-term memory loss. I don't really tell people openly that I'm sick unless the situation comes up that I have to tell people. So they tell me things that I have to do after the meeting and then I'll tell people, "Oh actually you have to keep reminding me because you know, I have this condition." My condition is called lupus nephritis. In short, it's called SLE. I remember, once I was in the army I was feeling a bit unwell, like a headache of sorts. I went to see the army doctor. At first he thought I was chao keng (slacking off) but when he saw my records, his (facial expression became) very pitiful and sorrowful. He said, "Oh, you're such a poor thing. How many days of MC (Medical Certificate) do you want? I'll give it to you." Actually, my life is like a time bomb. My health is like a time bomb. Meaning to say that, touch wood, there can be a relapse anytime my kidneys can be rejected anytime. Internally, things are just hanging on a thread. I was diagnosed at the age of nineteen. I had this drooping of eyelids. I thought there was something wrong with my eyes so I went to this ophthalmologist. So, they were saying, "Hey, no, it's not due to your eyes it's due to some neurological disease-related condition." He just told me, "Okay, this gland (is producing) too many antibodies and it is attacking your other muscles. Antibodies are supposed to help you, but you have too many. So, once it is removed, your condition will be better." It is a gland quite near to my heart, this area so you can see the scar here, actually. I didn't know it would leave such a long, permanent scar here. I never expected that. Once out of the operating theatre normally, maybe one week later you should be going to the normal ward from the ICU (Intensive Care Unit). But I stayed there for almost two-and-a-half months because I could not breathe by myself I needed to rely on a respirator. In fact, I just wanted to end my life at that time. I just told my sister, "Just bring me back (home) I'll be very happy if I can just go home and die on the spot. I'll also be happy." [Laughter] One of my friends in school pointed it out. She was like, "Your eyes look like a cat's." Because they were yellow. At first, I didn't think much of it. I just thought maybe it was the lighting or something. But then, slowly over time I felt like my skin got a bit more yellow. And then I started having a lot of stomach pains and cramps. Then, (I) had a lot of bloody diarrhoea. Sometimes the stools were also pale, like clay-coloured stools. My parents actually brought me to the A&E (Accident and Emergency) because of that. Because they felt that something was already wrong I mean, you're pooping blood and all that. At thirteen years old, I didn't really know what my condition was but I felt upset because they gave me medicine that made me gain weight. So I actually started to cut myself. It didn't last very long though because my teacher found out then she scolded me. She talked me out of it. I don't know if she remembers, but I'm thankful to her for that. When I was eight (or) nine years old I recall one fine day when I was going to pass urine then I felt a burning sensation (when urinating) and my legs started to swell. And when I woke up from my sleep I also felt that my eyes were swollen. My mother was a nurse and she felt that something was very amiss. So we went to the Chinese sinseh (traditional Chinese medicine doctor) and the sinseh said that it was probably a chronic kidney condition. (He) referred me to the specialist and yes, it was true. He said that it was because of lupus and the eventuality would be kidney failure. So that was the time when I remember me and my mom, we were in a hospital ward and then we both broke down and cried. My girlfriend came home and she found me sitting on the couch, staring into space and chewing on a bag of cotton buds. And she asked me, as you would expect "What are you doing?" But I couldn't answer her. And that's when she got worried and sent me to A&E. When I got discharged, I kind of always questioned "Why did this happen to me?" The statistics for this illness is one in 250,000 people a year. So why did I have to be that one person, you know? So that was kind of difficult for me. I think that's another very common question that people ask me. My immune system kept attacking my liver until my liver actually failed to work. I had to go for a transplant. That was when I was eighteen years old. I remember one of my friends asked me "Oh, it's great that you're going (for a) transplant right?" Then, I got a bit upset at her because I feel like everyone thinks (having a) transplant is a cure-all. But they don't realise that a transplant is the option that the doctor only gives when you've reached end-stage. Like when it is really bad enough that nothing else will work. I, personally, as a recipient of a kidney transplant a living kidney transplant my brother actually said that if I weren't his brother he probably (would not have) donated the kidney. After the kidney transplant the cocktail of medicines was greatly reduced but I still have to take medications every day for their anti-rejection (functions). Actually I wouldn't even think that I would recover fully in fact, I would think that I may go anytime. Initially, when I was diagnosed the doctors were telling me, yes there was a good chance I would make it to a hundred percent recovery. But, (during the) last therapy session they were saying, "Oh, you are probably never going to be able to get back to a hundred percent." And the analogy that they used was "If a car gets into an accident, even if you go to the workshop and repair it, it's still not going to be brand-new." At that session when I received the news I kind of like, slammed the table and just walked out the door from my therapy session and said, "Forget it, I'm not coming back here anymore." There were quite a few episodes of depression. And I actually had to see a psychiatrist and a psychologist. They told me not to focus on why it happened to me but to focus on how much I have improved since I came down with the illness. I think actually, being here today is kind of a major improvement for me as well. Till now, there's no cure for my condition. I mean, those medical researchers, when they want to find a cure they also think about the return of investment, right? If that medicine can cure a bigger population of course they would go for that first. Mine is a smaller group, maybe there is (research going on, but that) might have a long way to go. Do I feel (if it's) unfair? I don't feel (that it's) unfair because at least there is still medication to let me live a life. I still can breathe, just that I need to take long-term medication and I might be experiencing a lot of side effects (because of that). But it's okay! I mean, there are still other medicines to control these side effects. I still can breathe, that's the most important thing. When I started to apply for a few jobs after my graduation they had a list, a very comprehensive form that I had to fill up where I had to write down my medical condition so I had to be honest and truthful, so I wrote (them) down. And subsequently there weren't many interviews - there weren't any interviews after that. In my heart, I sort of knew that it was because of my medical condition that made me a less suitable candidate because when both have the same results and both have the same CCAs (Co-Curricular Activities) and both have the same leadership experience, so to speak why would you choose the one who has a serious medical condition? Ya. So I knew that I had to take the self-employment route. I was actually very open about my condition in the office and actually, very surprisingly a lot of my colleagues were very understanding of my condition. I was a project manager before I got sick and that involved a lot of keeping track of deadlines and all those kind of things. But, since I can't do that anymore the company and my colleagues have found me other work to do. I think yes, people do see me as less capable. But, I think it's also with the understanding of my illness. So it's not the case of me being lazy or whatever that I can't do certain things but I just can't help it. It's an official medical condition. So, yes, they see me as less capable but I'm okay with that. I do my best. To date, most of my colleagues don't know about my condition so, they don't see (me as) less capable. I still can - in fact, I'm more productive than them sometimes. [Laughter] And my boss gives me equal opportunities. Sometimes he knows that, "This is quite a stressful project." But he knows that I'm still capable and responsible. In terms of appraisal, I'm equal among all my colleagues. Actually, I went for one meetup in a way, a matchmaking session. So I was very honest with the people I met that I actually have this autoimmune disease, that kind of condition. So, I was being treated as a different class of person in a way. So he didn't want to continue because of my medical condition. I always feel that there are good apples around just that the timing may not be correct because there are always very nice stories where okay guys are even willing to take care of their sick companion for life that kind of thing. So I feel that when the time is right, I will also find that right person. My classmates don't seem to think that I'm doing as much as them. So, I feel like people who don't really know me will look down on me. There was this girl who I thought I was friends with in school. Then we had to do a group project together and I thought she understood my problems because she was one of the only two (people) who I talked to mostly in class. But then, it turns out she complained to another friend that she felt that I didn't do my part in the project and that she was tanking (dealing with) everything. She said something like "So what if she has medical problems. Everyone also has their own problems." So I felt very betrayed by that. To be honest, I'm not really disappointed because I feel I've proven myself enough to those who I care about. If I spend my time being angry at people, I'll just get more tired out. Why should you pity me? I still lead the same life as you and sometimes even better than you. So, I don't need people to give me better treatment or see me as a less privileged person, no. You don't need to. We are all equal. I would say my faith, my religion has helped me a lot whereby I learnt from my mentor in my life (that) actually, I'm someone who is much more fortunate than others. (That) made me feel like "Hey, there's always hope." I used to have very low self-esteem, very low confidence because of all my scars. But then, I was taught what beauty is. It's about inner (beauty). So I can also shine as beautifully as (other) people. I don't really like being pitied but I prefer being pitied rather than having my problems brushed off. Because at least if you pity me, it means you feel sympathy for me. So you understand that I am going through something that is a bit bigger than what other kids my age go through. And it is a form of acknowledgement because validation is something that I think most people with illnesses struggle with especially those with invisible symptoms. Maybe get piss drunk? [Laughter] I have this dream where I want to go to Disney World with my mom and ride all the rollercoasters there. Even though it is a bit late but at least I want to experience some of the happiness that other people have been through. After the transplant, my symptoms were mostly gone. Before that, my skin was actually yellow. like totally yellow. So I could not wear nice clothes I didn't want to dress up well. I didn't want to like, do the things that normal kids would want to do. Because during that time I felt like, "What's the point?" So now's the time for me to awaken as a teenager. I hope I can be in those less-developed countries where there are very poor living conditions where I can teach the students. Yeah. That's what I want to do. Because of my medical condition, I cannot join all these volunteering works. I think, that's what I would love to do. The first thing that came to my mind was to be able to drink water. A kidney dialysis patient can only drink 500ml of water every day. We feel thirsty 24/7. And every drop of water especially ice water, that was my favourite when I was on dialysis to us, it is precious. And I recall once after the kidney transplant the doctor even advised, "You need to drink as much water as possible." I was so happy, I gulped down one Ice Mountain, one litre of water I just drank [Gulping noises] and I went into the shower, when I was showering I was drinking water. Drinking the tap water and everything. So, it was a release. Even simple things like drinking water, I don't take it for granted. I think, people with autoimmune diseases I just want to say, "Hang in there". Life is not over even though you've come down with the disease. There will always be somebody who is willing to support you and see you through it. I think the best way to know what to do for another patient is if you ask them what they want you to do. I think what hurts me the most is that people ask you to go out and you have to keep saying no because you are tired. And then they actually stop asking. But the thing is that if you keep asking on days that I feel well I will say "Yes". Because, I'd rather have that option. I cannot be strong like other boys. So I studied very hard, I scored well academically. Actually deep inside I felt inferior. Sometimes, it is our mind and our heart that suffer the disability. Even when you meet obstacles, how can you overcome it and still stay so happy and hopeful? I feel like, everyone is given the opportunity to be happy it's just that you don't really realise that you can be happy too! When you meet our profiles, you might not realise that they have autoimmune diseases. Most of them suffer from invisible symptoms and so it may be hard for us to notice their pain. As a society, let us be kind to one another. We never know when someone might need some kindness. Do you know of any autoimmune diseases that are not mentioned in this video? Share with us in the comments below to spread awareness of these diseases. If you enjoyed our Can Ask Meh? episode you can watch more on our playlist over here. Click on the notification bell below to get notified of our latest released episode!
