Discussion Forums > Thalassemia Major

telling people about thalassaemia

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eesha:
Hi
I want to know if anyone else has this problem too. I find it very hard to tell people about my thalassaemia. I always hide it I dont tell friends or work, I dont know whjy i hate talking about it i like to ignore i have it when i am with other people. I dont disclose it to friends and work as i feel i get treated differently if people know, i know they feel sorry for me and i hate it. this way i can be normal if no one knows.

am i being a bad person by not telling people.

i have just started a new job and when asked about any medical problems i said no i havent got any, now i am wondering whther i should have done that, should i tell them, but i dont want anyone to know, because i know i will get treated differently and i dont like talking about it, i feel i can escape from it when people dont know.

does anyone else do this?

Smurfette:
Hi Eesha,

NO!!! I have never had that problem of hiding I have Thal Major!!!! All my relatives and my work collegues know I have to go to the hospital and what I have...I dont get treated differently either..cause i have told them not to treat me seperate than others...

I speak about Thal openly to anyone who wants to know and wants to learn more about it too...I am educating people....

If your not possitive on your outlook in life well you will lead a sheltered life..I have always looked on the brighter side of life and I am most of the times optimitstic as well....I do sometimes get sad..but thats normal..

Most of the times I am happy...

Hope this helps

EMommy:
I am really glad to see this topic because I often wonder how our daughter will feel about disclosing her condition to others.  I don't tell everyone about her Thal major because I don't want people to feel sorry for us.  People sometimes look at us with "that look" and I know they are wondering if we knew she had this condition before we adopted her.  Meanwhile, I feel like the luckiest Mom ever to be blessed with her in my life.
I wonder how it will be when she goes to school.  I don't want her to be that "kid with that disease" that people can't even pronounce.  I don't want kids to make fun of her.  I don't want nosey strangers to ask why she misses school sometimes.  (she's only 19 months yet)
I think that it seems "normal" to want to talk about it and also "normal" to not want to.  People have different personalities. 
How about the parents out there?  I know there are some people that should know, but where do you draw the line and let your child decide who s/he wants to share this with?
I am NOT saying that this disease is something that people should be afraid to talk about, but I do see the point about just being the "average joe" at the office. 

Lyanne:
Hi! Eesha,
    I do understand your dilemma, though when i was young my sister and I never hidden the fact that we are thalassemic all the people in school when we are in elementary and highschool knows our activity (every month of blood transfussion) that every so often we missed school for it, and we don't join certain activity at school that could harm us like especially ball sports........ they may not understand it but we do explain it to them over and over and so my sister and grew up to be known as having " special illness".

Smurfette:
To all who replied..

You tell people that you dont want them to feel sorry for your daughter or yourself..I do that...I tell them not to feel sorry for me..because there are much worse out there than me having thal....

I tell them to feel sorry for themselves cause they dont know what will be around the corner from them one day...i dont know either..but i dont feel sorry for anyone.....We all have our ailments and we all have to deal with them as best we can...

enough said I think.

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