Discussion Forums > Thalassemia Major

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eesha:
Hi,
I just wanted to know if there are any thals out there that have difficulty talking about and accepting the condition.

All my life i have hidden my condition-school, work freinds. I dont wnat anyone to know about it because I will be treated differently, i dont want people to feel sorry for me or treat me differently which they do when they know.
So i have never told anyone, as it makes me feel better, i forget i have the condition and feel normal, and since i have been on exjade that is even more so.
The only thing is the transfusions that reminds me, but that is once a month and my doctor has arranged it so i dont miss work so i can have a normal life.

I want to know am i the only 1 that feels this way as other thals i know are open about their problems, but i dont like even close freinds to know, 2 freinds found out by accident but i never talk about it to them and they respect that.
But i know others wont.

Manal:
Hi eesha and welcome to the site :welcomewagon

Actually we had several posts discussing this matter, but what ever you feel comfortable about, do it because i know that each person's circumstances differ from another according to the culture, country and all other surroundings

You can read in the following links
http://www.thalassemiapatientsandfriends.com/index.php?topic=3167.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1994.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1994.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=950.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=2746.0

Please feel free to discuss anything :wink

manal

Zaini:
Eesha,

Its totally up to you,if you don't feel comfortable telling anyone,then don't,i personally don't share my daughter's thal status with everyone,because you are right,people do feel pity for thals coz they don't know what is thal,and how it is possible to live a normal life even if you have thal,so its totally up to you,and what you feel comfortable with :) .

Take care,

Zaini.

Sharmin:
Eesha,

We have taken a "need to know" approach with my son's thalassemia as well.  Most people simply don't need to know and there may be more confusion than understanding.  You have a right to privacy regarding your health care information, and you have the right to share or withhold whatever you wish.  Many people view not wanting to disclose as being ashamed of the disease, I don't agree with that.  I think that you can be very proud of yourself, not at all ashamed of the disease - but still have a desire to keep it personal.    I think it goes along with saying that "I have thalassemia, I am NOT thalassemic".  Thalassemia does not need to be ones identity, therefore one does not need to announce it to everyone all of the time - unless if they wish to. 

Best of luck in all of your endeavors,

Sharmin

Canadian_Family:
We also have a need to know policy e.g. School or at my work (I have to take days off for appointmnets).

Nobody else knows about it (Surprise Surprise not even my or my wife's parents, siblings or any friend knows about it). Not that we are ashmed of it, rather we don't want it to be a topic of discussion on somebody else's dinning table.

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