opening up

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

Hi Sharmin,
 
I am agree with the "need to know" approach . I feel that we must share the fact with the person who should know it.

I agree with the need-to-know basis. I never really told anyone and it was somewhat embarrassing for me as a child when I faced difficulties such as gym class running. I has my splenectomy at an early age so I was always embarrassed about showing anyone my scar, and I still don't like to take my shirt off at the beach.

It's something that each individual has to deal with, and it really helps having a support network such as this website. A few months ago I randomly met another woman my age and she was really open and told everyone she said thal. because something came up about red meat when ordering food. I thought I could talk to her about it and added her on facebook but she chose to ignore my message me so I really felt lost once again, and that even someone who had thal. wouldn't want to talk to me about it.

I just joined this site and have been treated so kindly and with compassion and understanding and feel that I'm now in touch with something I've been missing out on for a long time.

Dear Sammy,
You said what exactly what i sometime notice happening with me. It's ok dear. Someone who is not interested in a bravo like you, then they are not upto you and they don't deserve you. Just throw them in a dustbin and get connected with those who understand you and want to have an interaction with you.