revealing the "secret"

i know i've probably mentioned this topic before..
but i really dont think that a thalassemic could live in a world wer they could just say with no second thought and with a smile..i have thalassemia..and gladly explain it ..and feel cheery and great and wonderful afterwards..
there must be something that is a hinderance to your mood when it comes to thalassemia...and therefore you are not so willingly inclined to reveal to just anyone you have this..
i dont know about anyone else..
but my hinderance is definetly that other people will not understand at all what this is ..
and that is completely fine, becasue i'm sure i dont know half the diseases out there..
but my point is this...i get mad that they dont understand, and now they are left trying to guess what is wrong with me by looking at me or talking about it amongst themselves or even wondering what i do day to day ...
but i also get mad that they might not now see me as an integral part of society.
yes, i think THAT is what i get most mad at..that they do not see me as an integral part of society.
and i am not saying this is true for EVERYONE.
but for example..just like there is racism, i believe there is people that think that you are not a valid human because you have a disease.
most definetly i think there is people out there that think this, just like there is racists.
so ..for me..revealing my disease to someone i've known for only 2 months..lets say a coworker..
would be taking a big chance.
it would be taking a big chance because, now i have clue how i will be viewed at.
at some of you might say this is completely cowardice.
and to some extent , i would agree.
i feel i am somewhat of a coward for not having the courage to stand up and say ..."i dont care if you dont come near me and give me disgusting looks because i have a disease"
i just know i dont have the courage to say that, because..simply put...i dont want to loose having equal treatment from them.
and some of you would say i'm a fake and a phony.
and to that i would completely agree.
i am a fake and a phony, becaue i am hiding the biggest part of my existence, basically what MADE me...when i look into somebody's eyes.
if you ask why i am doing this, why i am hiding my thalassemia..
i will tell you the answer..
i am so scared of it.
i'm terrified.
i'm so scared of my thalassemia i dont know what to do.
i really dont.
so i've locked it in my body.
it's trapped in there, and its never came out.
even when i tell somebody about it, it's still locked in me ..like a caged animal.
my thalassemia is not a ravenous animal.
infact, the poor creature if very peaceful and tame.
it doesnt want to harm anybody.
but it is a rebel.
my thalassemia is a rebel.
it will do whatever ever it wants without me.
and if i dont want to do what it wants, it will do it anyway.
my thalassemia is kind of like an alien too.
it is peaceful and just wants to learn and explore, but will dissect me if it has to in order to attain its own goals.
so basically, its been trapped in there because i have been stronger than it , in order to trap it.
but its made a home in me, and i am desperate to make peace with it.
so in short..
i am trying to please PEOPLE..and i am trying to please my THALASSEMIA
and i'm stuck in the middle
a lost body that just wants to be left alone so that it can just die and get this mystery over with.
this mystery of life.
as a human, it serves no purpose.

my point of writing is not to have anyone respond to this
i guess i just wanted to show a real side for once

hey red :
take it easy...
i have gone through this situation ... i cutted my self to my cousins i was living alone in my life..
then....you know wat i did. i build my character .. i made myself strong.... i prepare my self to introduce my self as a thal to anyone new peoples.... i used internet to tell people abt me and make friends ... then i gather my cousins on internet and present myself as computer champ between  them .. so they started coming to me for solutions of internet probs and computer probs ... ad thats how i came back in my cousin ....once i was in a wedding ceremony one of  my cousin's uncle asked to him  " is any probleme with their health .." he stayed silent then i replyed to his uncle abt the diseas and talked a much abt it....
alll  i want to say that world is a jungle in it you can survive untill u r not strong enough ...
soo try to b strong ... if someone dont care's abt ur emotion then take a football and kick that football and think that it is he/she  and say in your heart if u won't to care me then .. i dont care ...
i can live alone.... set a goal in  life and give your 100% to achieve that goal ...

Best Regards
take care
nice

Hi Red,

I find it somewhat easier after I've told someone about it and that too in a way that the other person does not have to hate me for having Thal. For instance taxi drivers are chatter bugs around here and I usually get asked "You O.K kid?" and I just tell them "Ya, it's a disease like any other disease and after I get blood like any medicine, I feel fine!"

Red I can understand what you are saying and I can also understand what Sajid & nice friend are saying.
I continue to live my life to the fullest and I'm not all that open about what I have.
It has nothing to do with anybody, but with the situation whether I share or not.
People and Drs ask me to talk to others and I do, but Thalassaemia is never mentioned as thats not what the patients need to know about, they want to know about ports and transfusions and how I feel about it all.
Another senario is that my specialist wants me to explain to learning doctors. Thats okay, I will talk but what I open up about depends on the reaction I get.
Not all my family know, they know I'm sick but I have never opened to all my cousins as I never want them to treat me any different.
What I reveal will always be determined by the person asking and whether I feel comfortable.
I don't hide what I am, but I dont talk about it unless I feel I can trust the person to treat me no different.  People who take the time to ask questions show that they care by taking an interest. That goes along way in my books. We are all different and it is up to us individually how and if we reveal our secret.
To me Thalassaemia is personal and I am very protective of it. I cant quite explain it, but I wont let any body put down my Thalassaemia or tell me that its bad.
It helped mould me into a person who has humility, compassion and strength to follow her dreams.

Actually it's kinda hard to decide who to tell and who not to. You have to decide what the reaction would be on the basis of their personality.

I try to analyze the person and tell them only enough about it without freaking them out and try to keep a positive outlook and try to convince them that it's not a big deal. This helps a lot to convert someone into a potential donor or to spread the awareness among their friends if you see that they are responding in a positive way.

However, an average Joe who is not much concerned about it should not be given any unnecessary details that he might not understand about you. I just tell them like I said above making them less concerned.

as i metioned above my cousins r realy supportive ....
they forced me several time to join the party and have some fun instead sitting on the chair in a corner .. i m realy thankfull to my cousins they forced me to come back in the life .. red i want to say that you have to present your self as a knowledgable person in your colegues n friends.. and a little bit friendly .... you have to show them that they cant enjoy any movement completely without you ... once you bcome a need of party no one will ignore you ... you have  to b more strong  to tell people about you and your diseas ... sajid is right it will create awareness to the people....okiey one more story ...
once i went to a computer shop ..the shop owner was looking again and again ...he was a little bit confused.. then i fel that i have to tell him.... i asked wat happened bro ...he answered r u ok  . then i told abt the diseas and also told him to test before marriage... is that not amazing  he agree to do tat wat i said to ........ so bcome stronger ...you can do it ... yas you can tell them abt it ...
in my  home no one wanted to talk on this topic ... even when i came on this site i was a little confused that wat will hapen if anyone  get to know that i m user of a thal comunity site .... then i decided to talk abt it ... i told to my family members that you cant hide that wat is running inside my body ...so it will b good that u share that to me so that i can able to create a complete pic of my health in my mind ...now everything is okey ...... soo b stronger my friend and then everything will b okiey ......
best of luck
Umair

aw thanks guys for the replies

i think if you tell people tho, they will automatically feel sorry or wierd in some way..and they will eventually get over it, and forget, but at that moment...it will happen

and i guess, i just dont want that MOMENT taken away from me, with their "shock"
i dont want that moment taken away from me, where i have to explain it because they are now scared (because you know by the look on their faces they are)..
i dont want that moment taken away from me that i am felt sorry for, when 2 seconds before i was a "badass" according to them..now..'aww, poor red'
you know.

for me, people look at me as kind of a lost drifter, a rebel, a rocker, 'tell me and i'll just hit her', a goofy kid, a comedian, the best driver next to speed demon..

and yes, i have an ego..
and yes, i'm a little selfish..

so for me to tell someone, is giving them power..

but i find my life gets harder if i dont tell them..
because i am bottling up all i hate

and i wish i could just take stuff out on the people who dont know..
but i know if they do know..
then they will look at me as weaker then,
and i wont be part of the 'gang' anymore..
i'll be looked at as someone they pick on..
you know..

its sad, but its happened

and what am i supposed to do..not go to the hospital anymore, not do what i have to do ..i cant do that..so clearly i still have this disease, i'll always have it, and it'll probably get worse, and i'll probably get weaker..
i'm not a good kid,
i didnt listen to my parents,
i took the hard road,
and now i'm in the hard road, with hard people
and i have to face it and deal with it,
i cant go back to being a shy little kid, and take a road to a reclused life..
i'm out there in the world and alot of people know me..
they just dont know this part of my life,
and i know..
if they did,
i'de loose alot of street
and i dont wanna loose my street
because the streets are where i made myself in..not my home, not my family,
just me..alone..in the streets

WOW!!!

READING ALL THESE POST JUST BLOWS ME AWAY!!!!

NO NO NO NO YOU GUYS ARE LOOKING AT THINGS ALL IN THE WRONG DIRECTIONS, ITS ALL ABOUT HOW YOU TELL PEOPLE...

ME, WELL I WAS NEVER ASHAMED TO TELL PEOPLE THAT I HAVE THAL MAJOR, NEVER IN MY LIFE HAVE I HID FROM IT...AT SCHOOL EVERYONE KNEW AND THEY DIDNT EVEN TREAT ME ANY DIFFERENT, THATS BECAUSE I MADE SURE THAT THEY KNEW I WAS ONE OF THEM FROM THE START...HIGH SCHOOL THE SAME, MY RELATIVES THEY ALL KNOW AND WHOEVER I MEET TILL TODAY I TELL THEM THAT I HAVE THAL MAJ AND I AM NO DIFFERENT TO THEM...

MY WORK, THEY ALL KNOW THAT I HAVE A DISORDER AND ENTAILS ME TO HAVE A DAY OFF TO GO FOR MY TRANS EVERY SO OFTEN...NO ONE HAS QUESTIONED ME...THEY ASK ME HOW THINGS ARE GOING FOR ME...

I DONT UNDERSTAND HOW SOME ARE SCARED TO TELL THEIR RELATIVES OR EVEN BEST FRIENDS...

BUT THATS ME!!!!

i AM NOT JUDGING ANYONE HERE EITHER..ITS YOUR CHOICE BUT ITS NOT A HARD TASK TO DO...JUST TELL THEM THAT YOU DONT WANT TO BE TREATED DIFFERENTLY...EVEN MY SISTER DOESNT TREAT ME ANY DIFFERENT..SHE SAYS THAT IF I AM ABLE TO DO THINGS THEN DO THEM...

I AM USUALLY UPFRONT ON EVERYTHING!!!

   As for me, I have no problem letting other pple know that I'm a thalessemic patient, usually other pple will just ask how i got it sometimes they get it that's a forever thing and can't be cured and others just suggest take this new pill , it might cure you. We (my sister and I ) practically grew up in the hospital so i'm okk with revealing "the secret".......

JUST A QUICK NOTE... ITS NOT A SECRET!!! I GET ALITTLE ANNOYED WHEN ITS CALLED THE SECRET OR A DISEASE, TO ME ITS NEITHER OF THE TWO!!!!

ITS A DISORDER THAT WE HAVE AND WE CANT DO MUCH ABOUT IT, BUT WE CAN LEAD A RESPECTABLE NORMAL LIFE IF WE DO WHAT WE ARE SUPPOSED TO DO...WITHOUT MANY INTERRUPTION TO OUR LIVES...

THANK YOU

Smurfette and Lyanne:
thanks for the replies

I know what you mean..and i Commend you both on being so upfront and casual.
I am like this as well..
BUUUT..
there is a major factor in all of this.
*the initial reaction of the person when you tell them.
that is NOT hidden, and you can clearly see EVERYTHING on their face..
sadness, fright, wonder, shock, amazement, bewildered, to name just a few...
And THAT is what the big deal is for me..
i dont think i can handle the INITIAL REACTION.

and i know ALOT of you here on the forum say "it doesnt matter how the other person reacts" or "so what if they make it a big deal" or "if they dont like it, you know they arent your friend"
and so forth..
but for me,
it matters.
it matters what other people think.
because when it comes down to it.
we are living on this earth together, we are in it together, for better or worse.
and to have to educate this other person on what thalassemia major is, when EVERYTHING was going smooth sailing is just so excruciating for me, because i'll know they'll just be MORE CONFUSED AND LEFT WITH QUESTIONS ABOUT ME AFTERWARDS!
HAHAHAHHAHAHA
maybe i'm wrong.
OH GOD PLEASE LET THERE BE A GOD< I HOPE I"M WRONG!
p.s - sorry for calling it the secret smurfette

Hi all,

I respect all of your decisions regarding your thalassemia.  I think we all do what is best for our situations. 

We have personally decided to share our son's thalassemia information only on a 'NEED TO KNOW' basis.  We let him know in many ways that his thalassemia is just a single 'facet' in his life and that it does not define him.  Nonetheless we do not treat it as something we are ashamed of in any way.  We have treated it as his 'personal medical information' that we share when we like and with whom we like.  We often share it with his homeroom teacher and have shared it with our most immediate family.  Everyone else treats him very normal - he does not 'miss' telling them and it allows him to be just himself around everyone else. 

Medical records are one of the most protected files people have - I don't see why anyone should feel compelled to share their medical history.  People who are happy to share it certainly should - and more private people don't have to.  Thalassemia is a disorder - it does not define you - why then does one 'have to' share it any more than they have to share any other medical or personal piece of information?  For me personally, thalassemia is something that we and our son's doctors discuss with him properly.  I would not want for other people to be discussing mis information with him - so it is best that he discuss his thalassemia with medical professionals or us.  Perhaps when he grows he will want to share this with others, perhaps he won't - we are giving him the opportunity to choose by not advertising his thalassemia. 

Frankly, most of our relatives and people in our community don't understand thalassemia and think of it as a weakness and inferiority.  I will not EVER expose my child to their pity and depressing remarks.  I sometimes regret telling some of the family members who I have told - despite the fact that my son is the most intelligent, athletic, energetic and well mannered boy in the family - they sometimes refer to him as an invalid and look for any sign of fatigue or illness (which he rarely displays) in him to remark how the 'poor sick boy' can't keep up.  There is no need to involve such people in our dealings with thalassemia - they certainly don't help.  I don't think our decision is a 'cowardice' decision - it is simply the best decision for us.  We save our strength to deal with the disease and keep him healthy.

He, until now, has been proud of who he is as a whole and does not feel any less because of his thalassemia.  I hope to keep it this way until he is old enough to know the difference between what other people are saying and what he believes. 

Again, this is my personal opinion and what works best for our lives - I'm sure everyone's scenerio is different.  I applaud everyone for the choices they make for themselves.

Shamin

Sharmin... I agree totally.
My parents did not advertise and left it for me to decide. Only aunts & uncles knew who were to take over if something happened to me.
Like Smurfette & the others I am not ashamed about who I am and I will answer questions and inform people but its through the hospital and never through my personal life as that is mine.
Thalassaemia is personal to me and when I'm outside the hospital, I call the shots on who knows because these are the people whos reaction would hurt me.
Red I can understand what you are worried about but for me when I told people, I made sure they understood that there is nothing wrong with me. Im happy & healthy.
People who know me know that I don't have a problem and if people cant accept Thalassaemia, then they dont accept me and that they have the problem.
Sounds harsh but my goal is to live long and happy with what god gave me.
A thirst for life and wonderful friends & family that love and care for me.
People always ask how do I feel about not being normal....
My reply is always.... I am normal. Just because my life is different it is still normal to me.
I hope Red that you will find the strength to decide for yourself what you are going to do.
We are only giving you points from our experiences and thoughts.
No matter what you choose, we are with you all the way.
Take Care
Cherie

Hello,

Cherieann I agree with what you said, but who ever tries to hurt me with their reactions on when I tell them about thal, well then they themselves will get a shock when I give them a piece of my mind... lol

I dont go broadcasting that I have a disorder, if people are interested I do tell them, but the people who have been told were so like your fine? and wow.. I dont get any funny stares or comments from others...

   I completely understand you Red and Smurfette  , I do get that reaction from other pple too but I don't mind if they do react that way pple may and may not understand as long as I know what really is and that I feel normal like other normal person.....and Smurfette I know the feeling that some pple think that thalassemia is some sort of disease.That pple think it will be cured by  taking some food supplements. Friends of my mom's when we were young been giving us all sort of medicines(herbals / food supplement)Like that would help!  LOL ,