Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: red on August 17, 2008, 10:47:20 PM
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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
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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 :wink 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
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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!"
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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.
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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.
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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
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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.. :wink
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
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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!!!
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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"....... :wink
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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 :)
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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
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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
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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. :wink
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
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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...
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I completely understand you Red and Smurfette :hugfriend, 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! :rolleyes LOL ,
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Lyanne,
Thats funny you saying that...when I was younger my mother believed that taking me to some kind of people will cure me of my thal.... :rotfl
She would take me to these places and they would cut my poor little body to eleviate the bad blood.... and to cure me...
There is no CURE for thalassaemia unless you have a bone marrow transplant and that even has its side effects and complications....
I know all to well, I have had 2 friends who had bone marrows and one of the survived and the other didnt...
So no matter what is said, I dont believe in anything that is said these days...
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hi ..
i just want to say that i dont feel ashamed to tell anyone that i m a thal or to discuss aout thal ...
if we will feel ashamed to tell abt thalassemia or talk abt thalasssemia then who will talk abt it ??? and who will aware other people abt thalassemia ???. who, who dont know anything abt this diseas !!.. soo we have to start discussions abt the diseas in oour friends and family ... to aware other abt it .... its our responsibility ...
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
:agree
i dont remember that i feel hurted to the reaction of people when telling them abt thalassemia ....
i dont care abt the reeactions, if i m happy with thalassemia then nobody turn my feelings into hurted and sad mood ....
sometime people said that you dont feel pain while pricking for insulin ?... how did you manage that ??. when usin pump ???.... then they ask's ...it will remain in your body for 16 hours ????. oh its sad to hear that.... i m soo sorry,,,, its horrible ..
Go away .. these sort of questions don't disturb me ...
ignore the people who want to tease you and just kick disturbing thoughts out of your mind ....
that's the way i live !!
Take Care
umair
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Hi all,
About the "Secrets"
Isn't it good that we know whats is wrong with our body, so that we can or try to take good care in order to have an almost good life and with full acceptance "A perfect life " :biggrin :biggrin :biggrin which I wish I had and I know its not possible. :dunno :dunno
So we all have to settle for a good reasonable life with all it s ups and down.
I would also wish to tell, the people that can't or do not wish to understand our blood disorder ,its them that has a problem due to not being well educated on the subject,
Everyone on this planet has something to contemplate with," such is life,"
WE all are special humans and very courageous too :clap :clap :clap :clap :clap :clap :clap :clap
To all my special friends no matter what , make the most of everyday, and good luck, remember, once we accept the thruth the problems lies else where.
Have a wonderfull day :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
With love from Kathy
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not to continue this discussion, because cleary everyone has stated there points and all are respected.
but, i think there is just no easy way to come out and say it.
but thats me.
i wish i was one of the characters from the wizard of oz
the lion wanted courage
the tin man wanted a heart
the scarecrow wanted a brain
dorothy wanted to go home
toto probably wanted a biscuit
and I just want an opening line!
hahahha :grin
if someone can just give me a cool/awsome opening line on how to say i have this thal...
than that would be AWSOME!
i would be most thankful!
and if it can be a little humourous too, that'de be great..
i dont expect anyone to come up with humourous opening lines right away..
but please..
if you have any..
shoot 'em my way!
cuz i'll use 'em!
:high5
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Kathy,
What you have said
"Isn't it good that we know whats is wrong with our body, so that we can or try to take good care in order to have an almost good life and with full acceptance "A perfect life " which I wish I had and I know its not possible.
So we all have to settle for a good reasonable life with all it s ups and down.
I would also wish to tell, the people that can't or do not wish to understand our blood disorder ,its them that has a problem due to not being well educated on the subject,
Everyone on this planet has something to contemplate with," such is life,"
WE all are special humans and very courageous too
To all my special friends no matter what , make the most of everyday, and good luck, remember, once we accept the thruth the problems lies else where."
You have summed it up very well.... Some people dont know!!!
Everyone take care
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Red, we are just talking here about ''awareness'' . If people are aware that there is something called thalassemia, you won't get these reactions. Be sure that even when you tell them they won't get the full picture and that is why they are surprised or give those negative reaction. My dear friend, because you are sensitive about thal, you are annoyed with such reactions. I am not saying that you shouldn't , but i am saying that this is the normal reaction of people to the unknow, even us we do the same to something we are new to.
If you just try to address anyone with any other topic other than thal, that they are not familiar with, you will get the same reaction. So the problem is not in thalassemia in itself but in the ignorance. If thal was a condition that is being worldwide known as fever, cold, diabitis or any other condition, you definetly won't get the same reaction.
Twenty or thirty years ago, in my country, when someone had cancer for example, this was considered a '' catastrophe'' to the extent that people never say that someone had cancer but they say that someone had got the ''bad disease'', people were just afraid to mention its name. They used to pity the patient and i thing people would die of their depression rather from the disease.
Now a days, because cancer is more known to everyone and it hits all ages and all people and you can find a lot of programes talking about it all kinds of media, things changed. Now when someone is known to have cancer, you can simply hear the answer '' oh dear, it is everywhere, everyone is getting it , it became like common cold, but it is imp[ortant to get treated early, this gives good results''. I swear that i have heard this answer many times from different classes of people.
Can you get the difference, this is the people way to express their ignorance for what you are saying. When thal is more known to everyone, i am sure that things will change
manal
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Hey Red :
But, i think there is just no easy way to come out and say it.
but thats me.
hey you can also say like that .... hummm ...well good question.. next question plz .. hahaha..
it happen in the press conference when leader find them selves that they cant answer this question .hahhaha after that u may start your presentation to that person asked about thalassemia ....
well i like to start it without hesitation .. by saying yes i m a patient of thal .. then wait for the repsonse of the person u r talking to ... and then everything will run smoothely during conversation ...
take care
Umair
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Hello,
When I was a little girl, my mother used to tell me not to explain my friends what was happening to me when I was not at school, etc. But they asked me, and they asked me because they wanted to know if I was feeling well or not so I always told them what happened. Years later, in High School, the situation was repeated, I knew more people who turned to be my friends in a couple of months and who wanted to be sure that I was ok. These new friend, specially one of them, decided to share the disease with me. They came with me to the hospital, they had patience with me when I was too tired to do physical efforts, etc. At University, the same situation, I explained my "no secret" to my new friends and we had a normal relationship.
The problem came when I started to work at my current company. I had always explained my illness at the interview but this time, they didn't ask so I didn't explain it. I started working at my current job 4 years ago. At the beggining, I just told the story to a colleage just in case anything happened. Then, 2 years and a half later, I decided to tell my bosses about Thalassemia. Although they seem to have understand the illness and they treat me like they treat every other worker, the fact that I hide the illness for more than two years, makes them think that there is more than what I have explained and they really don't feel confortable to ask how am I feeling or if everything is ok.
I thing that not to have explained Thalassemia at work at the beginning of everything was a very big mistake. I feel that maybe if I had explained the situation before, they would have seen it like a part of me (the same that my friends did from the very beginning of our relationship) and they would feel now more confortable to ask what they need to know about me in order to have a closer relationship with me.
About how to explain it, I always say that I have a kind of anemia called Thalassemia which means that I have to visit the hospital for blood transfusions regularly and so, sometimes I feel ok and sometimes I feel bad. Then, as time goes by, I answer to all the questions that they have on each situation they live by my side. By this way, I avoid giving too much information that the only thing that does is to make them feel sorry for what is happening to you.
Kisses for everybody,
Laura.
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hi all!
I am not a thal but my boyfriend is a thal major.
He told me so on our second - third date.I was a bit shocked.I heard of the desease but i didnt know exactly what it was.He explained to me.I also made my own research online and whatever question i had,i asked him.We re together and happy :wub
I say,give it a try and reveal it. :wink
I forgot to say that when i look at him i see my lovely bf,i dont see thal anywhere
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Cat,
Thank you for that lovely message:)
Sharmin
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This reminds me of something that George asked during the interactive sessions at Singapore. George asked "are you a 20 year old with thalassemia or are you a 20 year old thalassemic?" It's a lot to think about. Even though we refer to people as thals, we have to always remember that they are people and thalassemia is simply a condition people live with. They are not the condition. What you have said here Cat, shows that you already get it. Your bf has thalassemia but he is a person and not a condition.
Always see the person and not the condition. It's all that people ask.
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Hie..........Me new to this site......But I am sure that my experiences would help you in some way to clear your facts regarding REVEALING THE SECRET............I would just highlight when we were babies and we were diagnosed with thal major...........this secret was revealed to our parents....wen we grew up.....and we were sensible enough the same secret was revealed to us.......during our school life to avoid any mishap with us.....the same secret is revealed to our teachers...........as we move in life we have to reveal this secret to many people around us...........with choice or with no choice.......the mantra is if we have accepted ourselves the way we are..........we should damn care about what other people think about us........and my dear we should have postive attitude towards our lives atleast as because thal major is one thing which will be there with us all our life..........people will come and go............some will mark their presence with the affection of understanding us.......and we dont need those people in our life who cannot understand what thal major is all about..........Secondly at one point of time we want people to be aware about thal....but if we are not ready to talk about it......nobody will come forward to help us......take care and dont worry be happy...........
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@ Neeti Dhingra ,
Hi Neeti Dhingra ,
:welcome to the Site , i hope you will find this forum realy helpful and its member, realy kind hearted ... i hope you will find all the answers of your concerns ...
its a great way to sart posting, thanx for sharing your thought with us .its pretty true , all that you mentioned in your post .... all that you mentioned in your post is realy encouraging for all Thals .
@ Cat,
Hi Cat ,
its realy nice to read your story of life ,May God bless you and your BF with a super duper, Health and the wealth of Happiness , may God bless you both with a long life full of happiness and joy ,
Take Care
Umair
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Hello to all,
how s life going on my frns?
Hello Neeti, Most welcome on the site. :welcomewagon
m agree wid you, we have to accept ourself as we r..and we are normal human being, thal is not a problem..problem is how to deal with it..and if we have a positive attitude we can win over it.
ya sometimes it affects our life in many ways..but we have that courage to face it.
hello cat,
how ru doing? Nice to have you on this site..it made me more confident that some peoples are there who can understand our problems, our emotions, and accept us without any regret
Thanx..
GOD BLESS YOU
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Later I will read this better.
When my grandmother became ill (cancer) and we heard the bad news she wanted to visit for the last time 'de keukenhof'. We borrow a wheelchair to let her see the flowers. After a hour my grandmother wanted to walk. I was tired, so i thought 'let's sit'.
I experience how people look at people in a wheelchair. They all looked with a sad face. The whole time I was thinking "I'm not a poor girl of 19 year'.
People really treat you different when you sit in a wheelchair then walking slowely around with a chagrin face because of the tiredness. The recognition is good, feels also bad.
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Hello again.
I am from Greece.
Here there is a lot of prejudice around thals.
They still have the image of thals as they were 30-40 years ago.
And yes,30 years ago,before desferal,pills and safe trafusions,things were quite bad for thals.
Nowadays,things have dramatically changed!
If you dont explain this to people,they ll never know :dunno
Yes people are cruel and some of them may not accept the difference in you.But there will be more than enough who will.
Do you think that "healthy" people as me dont get rejected?
As for the tiredness,i am a smoker and i get more easily tired than my bf :biggrin
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I competely understand u Red. I think I am in the same shoes during my whole life. All people are different and so they feel in diff. way whether they shoul talk about the disease they have or just not.
Well... I am 20 years old and during all the years I have never shared the truth that I have thalassemia with other people except my family and my relatives.
At first u may think it's quite strange and it is not normal to keep a secret that u have thalassemia. But , actually I have realized that telling other people about thalassemia in most cases do not help you, what is more u feel more depressed after that - because of their reactions or questions , for example.
I just wanna tell u that there are many people around us that are not aware at all about what is really thalassemia as a disease. And if u share with them that u have it, that u need blood every 3-4 weeks , that u use desferal or other chelation in order to release you ferretin level.. all these things might seem to be very shocking for them.. It is inevitable that they start looking at u from an other angle... sometimes they start unconsciously avoiding you or start oversympathizing you.. You see their reactions, you see they're afraid and confused .. and all these things may depress you more than if you have never explained them about your health condition...
A girl with thal. like us has told me that experienced a very sad situation, where she knew people were discussing her , trying to make some stupid assumptions about her future life and life length.. It's really awful to hear people perceive you in such way and talking such things about you....
SO, THAT is why my opinion is that it is not needed to walk and tell all the people you know , that you have thalassemia.. on the opposite , you should share such things with your family and your closest friends. because others are not competent about the disease and they cannot help you , they can only hurt you more..
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To Rozitka
I understand what you are saying and agree with how Thalassaemia is perceived and people's reactions are varied but I am saddened by your view of being hurt more by others.
I know it does happen but we should not be worried about what others are saying. I have been through that in my childhood and I know that children can be very hurtful but I also know who my true friends are. Yes some people are shocked and some may change how they treat you.
But I have learnt through trial and error that if I want to treated no differently, then I need to either say so. People who find out now, ask me questions and I answer with a smile on my face. They comment on my attitude and I reply that there's nothing special about me, I smile because I am happy. If you don't know what life is like without needles and such... then you have nothing to miss.
Life is what we make it.... Life is too short for me to worry about others thoughts of me.
I have people who love me for being me and is all I need, don't you think?
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To cherieann
well, I agree with u to some extend... but actually it was just my opinion.. because many doctors say talk about your disease with people, explain to them.. but I think that not everyone can really underrstand u..
Actually, I think I'm quite a happy person knowing that my family and friends are with me.. my boyfriend is loving me.. they know me quite well , they know I have thalassemia and they really can help me in some difficult moments because THEY KNOW HOW to do it.
What about the others?? How a man for example can help u in some way?? Is he competent with this disease, does he know what it is really ? why u need to explain such things to people that are totally unaweare of what is really living with thalassemia as they can't be of your help because of their incompetence, they can't even understand you ...
I think everyone feels to whom he/she can be trustful and I have find the ones I can.. and I have some bad memories of those who could not ..
:wink
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Rozitka,
My personal opinion is the same as yours. I think that a person's medical information and files are private and confidential for a reason and no one should feel the pressure to share their medical info with anyone unless if they are comfortable. Thalassemia is not a well known and understood disease in most parts of the world, and the health of patients varies greatly depending on the care that they have received.
We spend a lot of time educating ourselves and living a life of confidence and positivity - while fighting a disease that is challenging. For some people the additional challenge of people's negative reactions is okay and for others it is not necessary. We share little A's condition with close family members and friends and everyone else on a need to know basis - such as his teachers and school. I haven't found it necessary to stop people on the street - shake their hands and say - "hi meet my son, monthly blood recipient". Frankly, I think that he has enough to deal with and he does it very well - I like the normalcy in his life from everyone not knowing. I don't think he needs to deal with teasing, feeling different or needing to explain anything to anyone who doesn't need to know his medical history in the first place. Also, I would not want for someone to search outdated information and bring it to him - telling him that his prognosis is what it was believed to be 30 years ago. It is important to me that he receives his information from trusted sources like us and medical professionals. My own extended family, knowing that he had just one transfusion tends to treat him very differently - often they tell the other kids to not play with him as it will "wear him out because he is too weak", when my son hears this he is almost in tears. How can a little bit of play wear him out if he plays 3 hockey games a day? These words often leave me bruised too and I would rather not have to hear them.
I know that opinions for this topic vary greatly - and everyone handles things differently. I support those who like to share and those who prefer to keep their medical info private and share with trusted ones. It is a matter of choice and comfort level and says nothing about your courage, sense of pride in all that you are or your desire to raise awareness about this disease.
Sharmin
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Well said Sharmin :hugfriend
To Rozitka, I do not mean to upset you as I do understand and agree to some point. We are all different and similiar with how we cope with Thalassaemia.
I just get upset if I feel you are making choices because of what you hear and not from what your heart tells you. We have instincts to whom we can trust and that it our right to say who we tell or not. My husband is very vocal of what I go through to the point where he will tell his friends or others off for complaining of trivial things. We have beauty disscussions about whether he should be letting people know of my personal stuff. I know he is proud but I will always feel that it is my right and choice to decide who knows or not as Thalassaemia is personal to me and only special people I trust will know if and when I am ready.
Sometimes when people find out and start reacting differently it does upset me but then it makes me mad to the point where I will strive harder to live life to the fullest.
My attitude is always not to let other's opinions stop me from being me.
To all my friends out there..... Be what you want to be, choose how to make it happen and don't let anyone stop you.
We are all special and each of us has a story to share, and advice to give but at the end of the day..
We are responsible for our own happiness and selfcare. Let this be what helps you with your personal decisions and not just because someone told you too.
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To Sharmin
I felt your words as I went through that as a child.
Not all my family knew what I had, they only knew I was a sickly child. Back then I was the only Thalassaemic in New Zealand receiving transfusions. There were only a handful of Thal minors too.
I wish we could make the world a happier place where we don't have to put up with that kind of talk but the world will always be full of people with their beliefs whether they are right or wrong.
I only hope that you and your wonderful son know just how special you are to us.
Through you, Little A is a positive influence to us all and one day he will be the image of Thalassaemia. - A go getter who lets nothing pull him down.
The pain will lessen and one day you both won't hurt as much with the comments.
May Allah be with you both.
(Did I say that right?) :hugfriend
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Cherieann,
Thank you kindly for your words :hugfriend I have always admired your courage and your attitude, I also admire the way that you live your life. You are a true inspiration to the children that you work with - and to my son. Reading your posts will make him a better person. Just like you - and the other adult thals on this site - I hope that he helps other thals live full and happy lives.
I wish you and your wonderful husband every happiness in the world:) You are right, some people come into the world to make it a better place - they look for words to soothe someone's wounds or to make them feel better - others seem to be here to bring people down and emphasize other people's weaknesses. I think that we need to make a choice about who we are going to listen to:)
Thank you ever so kindly - I am Sikh by religion - but I would feel very fortunate to have Allah, Christ or any other form of god with my son and myself - I wish you the same my dear :hugfriend :hugfriend
much love,
Sharmin
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Cherieann & Rozitka,
I think that this topic is a very important one in thal and I am glad that we are discussing it. You are both very special ladies and we all have a lot to learn from each other's opinions :) I have a lot to learn from you as a mother of a young thal. Thanks for sharing :hugfriend :hugfriend
Sharmin
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Oh Sharmin,
You are the person who uses words to soothe. I had tears in my eyes as I read your comment but now they are flowing as I read your last comment. :wah
God blessed me when I found this site. You are all inspirations to me.
Each opinion expressed whether I agree or not gives me a different way to look at everything.
I try to teach my husband and niece that there is never one right way but always different answers to the same question. Wisdom is knowing which is the right one for yourself.
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So true my friend - wouldn't it be great if everyone could understand that? That there is more than one right answer and that we all need to chose the one that works best for us - or that is in line with our values?
Thanks for that Cherieann :)
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I have read all your messages. It made me feel better. Thank you :smileblue
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Oh, I have just read your comments on the topic and cannot explain how excited I feel now..
You have told wonderful things and both sharmin and cherieann have helped me a lot. The things you have mentioned made me think in more positive way as I have changed something in my senses and now feel things differently. I think we should fight for our own health and believe things are going to be alright. Wish all the best and please take care !
P.S I'm glad to have talk with you. I am totally convinced that here, on this site, we can be of great help to each other-as we give advice and share problems.
Thank you! :wink
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I agree with Sharmin totally,i share my daughter's information on need to know basis,people whose comments will leave me and my daughter feeling miserable are not welcomed to share this precious information with us,although i'd be happy to share this with every one but problem is people's attitude towards thal,they think of it as a fatal disease,which is definitely not true.
I just can not stand pity in any one's eyes,for my daughter,she is not pitiable,she is enviable,she is doing great in every aspect of her life Mashallah.I don't care what people think but i don't want their negative comments to leave a negative impact on my daughter.Last time when we went for transfusion,their was a father who kept saying "these children this,these children that" and it irritated me like hell,Afterwards i told my husband what's that "these children" supposed to mean ? Children are just children,you can not classify them due to their dis order ,thal is not what signifies my daughter,it's her courage and determination to live a happy life,which does.
Zaini.
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:agree :exactly
Sharmin
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I agree with Sharmin totally,i share my daughter's information on need to know basis,people whose comments will leave me and my daughter feeling miserable are not welcomed to share this precious information with us,although i'd be happy to share this with every one but problem is people's attitude towards thal,they think of it as a fatal disease,which is definitely not true.
I just can not stand pity in any one's eyes,for my daughter,she is not pitiable,she is enviable,she is doing great in every aspect of her life Mashallah.I don't care what people think but i don't want their negative comments to leave a negative impact on my daughter.Last time when we went for transfusion,their was a father who kept saying "these children this,these children that" and it irritated me like hell,Afterwards i told my husband what's that "these children" supposed to mean ? Children are just children,you can not classify them due to their dis order ,thal is not what signifies my daughter,it's her courage and determination to live a happy life,which does.
Zaini.
This happend to me one time (alone in the hospital at the age of only 14).
Parents or maybe only the dad coming with child to the hospital for the most easy operation.
Dad kept looking and looking to me. Then he ask/said: "You got cancer".
I said: "No, I dont have cancer". I also close the curtains around the bed. Goodbye! :whyme :sadnope :raspberries
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You are doing a wonderful job Zaini.
Peartree, yes people can be heartless to the point that they do not realise what they have said or done.
I think we are all doing a great job dealing with life and it helps to come here and be surrounded with people who care for us.
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Though i am late in joining this wonderful discussion, i too agree with Sharmin in her opinion. Unfortunatly when my son was first diagnoised all my relatives knew cause we are all so close but now i regret that and i go with the same rule of need to know basis
manal
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Dearest Manal I personally feel that no one can be late in joining a discussion. This topic has been around for a while and I think that it is great that this topic has been dug up and replied to.
Everybody's ideas and opinions are a welcome source of information for us all.
The other thing is that sometimes new technology comes along and give us a new way to look at things.
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This happend to me one time (alone in the hospital at the age of only 14).
Parents or maybe only the dad coming with child to the hospital for the most easy operation.
Dad kept looking and looking to me. Then he ask/said: "You got cancer".
I said: "No, I dont have cancer". I also close the curtains around the bed. Goodbye
Sorry Dore,that must be horrible,this is what i want to prevent my child from,she has a wonderful attitude towards life,she never complains about thal,she is a very active child,she participates in each and every co-curricular activity in her school,and she is brilliant in her studies,people sometimes doesn't believe that she is learning Holy Quran by heart,it's considered a very difficult thing,coz you don't just have to learn it but you have to remember it for whole your life,and learning a book in a language you don't understand,it's called a miracle here.I am really proud of her.
I want her to be that way whole her life,i wish she'll become a hemotologist one day :) .
Zaini.
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Thanks Cherieann :hugfriend :hugfriend I am also glad that this discussion is opened. What makes me regret what that some of my relatives knew is -- like Zaini said--- people ignorance sometimes hurts as when one of my relatives was one asking infront of my son '' can he get married??'' She is not only ignorant of the disease but does not sense that not everything should be asked in front of a child.
manal
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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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Dear Jlyayarta,
Thank you for sharing your story. Thalassemia is a lifelong condition, patients and families face many emotions in dealing with the condition as well as everything else that life offers us.
This is a safe place for you to share your experiences and I hope that together we can guide each other toward a healthier and happier future.
Sharmin
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Hi Jlyayarta
I totally totally agree with Sharmin...
This is a wonderful place where you can be yourself.
We may have differences of opinions or experiences but what we share is a common goal to support one another as we live life.
Never be shy to have your say.
We are all family.
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Hi Jlyayarta ,
Thank you for sharig your story , its not completely but a little similar to my one , i havn't shared my story yet on anywhere on cyber world :biggrin ... but i will try my best to write my story completely and then i will share .... its nice to hear about you and to know about how you copped to your thal and how you faced the world ... hope to hear more encouraging and informative stories from you in future ...
Best Regards
Take Care
Umair
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Umair,
I look forward to reading your story:)
Sharmin
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Sure !! Sis ,
i will try my best to make possible and i hope that it will happen Realy soon....
Take Care
Umair
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Jlyayarta,
I feel sorry to hear that you had to stop with school. I hope some day you will be able to return. Over the ages we start to get having a better immuumsystem. Atleast that's what I think.
Yes, this is a place where you can be completely yourself. I see it as a gift.
Owh, I would like to chat, but at the moment I got some serious and stupid pc problems so it would take a while. You can sent me a private message ;)
Best wishes from the Netherlands,
Dore
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I wanted to read your story Umair, i think it will be great if can see others story so we can understand the situation more :D dont you think so?
for the schooling i think i'm to old and lazy now for education :P addicted in earning some money..
i've added your msn dore. thank you.
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hi jlayarta ,
you will be reading my story very soon , despite the fact that i have not yet started writing it but i will try my best to start on it soon :grin :grin :grin .... in my story there is a lil about schooling as well .. last year i got admision in 9th class .. i will mention abt the my experience of schooling last year as well in my story ...
take care
Umair
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even tho it IS all the craze now..all these vampire shows, movies, ect..its rather hip to be a vampire now...
isnt it somewhat a coping mechanism to say your a vampire..or any other "joke" relating that??
i find that as i get older,
i do not want to be using the line "i am a vampire ha ha" anymore.
it almost sounds like a joke that is in all actuality true, so you kinda give an uncomfortable chuckle at the end.
ya know?
i dont know, i dont wanna be 30 and saying i'm a vampire to people ,
i mean..
i have respect for whatever anyone wants to say..
but,
i also think its a way to make yourself feel comfortable , with something you might not be so comfortable with.
and that to me is escapism.
:dunno
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I understand your point but we must all remember that what we may not like personally, may actually help others with how they cope with Thalassaemia.
At the end of the day what matters is that we are living and enjoying our life.
Much love to you all
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you are absolutely true red,
and yeah its our difference in opinion, but in my point of view its just an expression that i'm bored just to tell them i've thalassemia instead of telling the sickness in front i rather start a new line of interesting story and end it with the truth or not (depending on situation).
As for Vampire story, i'm really think this vampirism suits thalassemia very well, not only vampire / draculla drink blood for his need not only his hunger, we also need blood, thou we are not immortal maybe we're the modern vampire after all?
and if you read it more about draculla / vampire stuff you'll find more similarity with thalassemia, I think that way thou ;)
btw, Happy Holidays!!
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thou we are not immortal maybe we're the modern vampire after all?
i like that :yes
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:think
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I am not so open about my case either. Not because i am afraid of being rejected by people who can't understand but because i don't want to be treated differently especially as a very fragile thing that should be well taken care of. sometimes i feel that i want to tell my friends but i don't know how to start and what to say. i don't want them to start worrying about me having this and being overprotective like most of the people who know. i prefer the way they treat me when they know nothing.
yeah, we really are comparable to vampires. I even have this joke-idea that we are descendants of the vampires. vampires evolved to thal people becuse they don't want to hurt humans anymore. hahaha ;D
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You know they say that Indian cinema is a mix of too many emotions....but I say dont give them too much credit-their inspiration is after all this life! So many emotions in one topic!!!!! There is almost a lyric in Red's post so we could take it as a song too!
In the end it is all about the person... It is not just about a disease/condition....this issue may be regarding anything else...
Life is tough to deal with and one learns as one faces it... till you come to a door you dont knock do you? I did not realise that I had the energy-physically and mentally to face it till I had to! One comes face to face with many questions and about personal things that you may want to share with someone... it could even be something as silly as a habit of yours...Doesnt everyone try to be nice when they meet someone for the first time. Especially when it is a date? And then later one realises where the whole thing is going and shares more...
I guess by now Red is on better terms with the whole issue...and even if not-you have your whole life to deal with it! Life will give you a variety of problems to deal with and then maybe this will seem like not such a big thing....or so I hope...lesser of many bigger evils huh!
Humour is a good way to deal with issues too, unless you use it to suppress your true feelings... so you can choose your own weapons to battle the wars in life provided you dont hurt yourself with those sharp edges...
Too much of preaching isnt too good for me....guess I better stop here...dont have the authority to go on more...you all know better!
Love to all...and may all have smiles on the lips and their warmth in the hearts....
Madhavi
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Hi Madhavi,
Its not about preaching its about having your say.
No one here has more authority than the rest.
Your post is well written which tells us your views and thoughts.
We are all the same and yet we deal with thal differently as we do with life.
Not all of us will experience the exact same things but it helps to have everyone's views or trials to help with our personal decisions.
That is what our community is about.
But I do agree with your post but I have a different way of talking. hehe
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Hi cheriann,
well written :clap :clap :clap :clap :clap :clap
For you :flowers :flowers :flowers :flowers.
I'm happy that our forum is a soft place to land we all are in need of undestanding, and it's nice to think outside the box
yes we need to keep an open mind "please dont count on mine"I already has the" mad cow disease" :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
I cant help myself :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
I cant be serious ??? ??? ??? ??? ??? ???
Only fun and cheeks
Much love Kathy
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Hi ya Kathy!
Hope all is well with you and thanks for the flowers.
You really shouldn't have. hehehe
It wonderful having people who have a warp sense of humour. :rotfl
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:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
Thought hugs would go well with the flowers....I wanted to get more....but then my fingers gave up on me! Real hugs are so much better than these virtual ones!
For you Cheriann...
Madhavi
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:rotfl You did well with your hugs.
Real are always better than virtual but most appreciated.
Told you that its wonderful to have people to share moments with. :hugfriend
Now I'm off to go and blush. :wub hehehe
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I read all answers, so much different opinions...
I was keeping my thal in secret 10 years ago, now i dont, when i was dating :wink, in first date i told boy i have thal., so if he is for me will understand me, will help me, etc., when i was searching for job i told i have thal, again no problems.
I am proud that iam different, why to keep secret :wink
Just chelate! :wink
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:hugfriend Hi Tedi
You go girl.....
If he loves you, then he will accept you as a wonderful and caring person.
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why to keep secret
Hi Tedi ,
i agree, why to keep it or try tokeep it secret ... i never tried to keep it secret.. even i told and explain wat the thallassemia is without any hesitation and anything else like hesitation .. even i never tried to hide my pump .. and whenever anyone asked wat is this and why u r keeping this with you , i never hesitate to tell him abt that ... even i never kept it as secret on internet , while it was easy to keep it as a secret in chatting , but i never felt it is sumthing to keep as a secret .. my way of thinking is to be hhapy watever u r , and feel proud whoever you r ... glad to read your post , tedi ...
If he loves you, then he will accept you as a wonderful and caring person.
WELL SAID CHERIEAN , :agree VERY TRUE
Best Regards
Take Care
Umair