Another nice Topic that make me feel lucky to find this community.
I hope I can share my experience ... Because in Indonesia when so many bacteria, virus, and so on.. My childhood is not as good as yours or others (in my point of view tought).
I'm stopped schooling at 5th Primary grade, and its all because of thal, not the thal or blood need it self that stopped me from school but the weakness that i got from thal, my parents were so protective.. I cant even play with my friends, when its break time i only can sit, chit chat, eat, and so on. Unfortunately even they are so protective, it cant help me with virus / bacteria in school, in fact in 4 years of my school there once every 3-4 weeks i fell sick and search for doctor, then my HB drop more and more, need more tranfusion than ever (thats what they tought). At the final decision my local doctor suggested to stop school.
Here I am, and that was all hard and long day, not only that even when i'm still schooling some of people may think thal are weird or thal may be passed to them trough air or so on so i got abandoned in the society
.
After that can you imagine how bad that would be? How scary, how boring, that was so insane! Why? Because all i can do is just watch TV, Video Game, Eat, and Sleep.. (not yet have computer and internet at that time).
That was scary moment, because when you've nothing to do, no task at all, your brain will think about the past, the present, and the future, and it is not so good for me, I saw so many question WHY and WHY.
But then it only goes for 2 years, since i got my computers and online in the cyber world, all the think has gone and I'm not attached to bad thinks any more. But still this is so bad because i cant socialize with many people in real face to face...
That was my beginning of my understanding what is it to do with Thal.
Thalassemia is a Gift from God isnt it? Or do you think its a Curse?
I found so many people on the net, that whenever sometimes i told them they suddenly disappear, time after time, person to person and then group to group, I met so many people so many articles, and so many information. Then I started to think, Why am I taking this Thalassemia as a Curse instead a Gift? Why would I be sad if after passing trough so many things so many years but i'm still okay.
There are so many great full things that only happend because we have thal, there should be always one or two. In front my eyes there are a give from God, This website are one of them. And as for me I've build my community from 2004, its Indonesian, that's the one i loved most, because I have thal that community could exist and I really thanking God to give me this path of life.
So afterwards I never think thalassemia as a curse, this is a Give, a path that we must walk no matter what happen and even if we reject that it will lead us to worse scenario of life.
As for telling others, I'm still doing it, tought they're so many reactions indeed, specially in my condition they will never notices it infact they all dont know till i tell them. I rather not to tell them tought but it is not possible because when they are asking about my grade, my uni or else, i've no idea what to answer.
But, this is after so many years i'm telling people what i have, what i did, and when Thalassemia story started it will be so long that i'm usually got bored my self, so i'm improving the story with another story...
kind of like this :
He : "what are you doing these days in School/Uni?"
Me : "I'm not schooling or Uni Anymore"
He : "Heh? So young and not school/uni anymore? why? so what are you doing?"
This is where the fun parts begin, if we want to tell them, so be it, if not i'm just sayin "I'm working now, helping my dad" (thats the facts tought :P) I'm not telling about thal at all.
But in some case I feel like to tell them so this line begins :
Me : "Because I'm a Vampire."
He : "What?? stop joking, I'm serious!"
Me : "Yeah, I'm not joking, I'm quite serious and yes, I'm vampire."
Usually this rate They will notice something, either i'm lying for something or the smart one will guess that i've some anemia or kind of that.
And here We can also see they behaviour, are they care about us or not, is it just formality to ask that question or they're really care.
And the conversation go anywhere i like.
These days, my toughts always the same.. but maybe sometimes things get hard and i started to think on bad side of life, but it does happen to all the people right? not only thal.
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