revealing the "secret"

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.... 

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...

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

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

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 " 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.

Have a wonderfull day

With love from Kathy

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 

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!
 

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

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

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

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.

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
I say,give it a try and reveal it.


I forgot to say that when i look at him i see my lovely bf,i dont see thal anywhere

Cat,

Thank you for that lovely message:) 

Sharmin

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.

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...........

@ Neeti Dhingra ,

Hi Neeti Dhingra  ,
  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

Hello to all,
how s  life going on my frns?

Hello Neeti,  Most welcome on the site.
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

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.