Discussion Forums > Thalassemia Major

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Waleed:
Its nice to hear you've stood in getting education and work. Eesha none of us want thal to be our ID and simply recognizing the fact the we are thals or just simply sharing with others about thal DOES NOT makes it our ID. Relatives relatives relatives..a big sigh... you'r not alone in this matter however, its what YOU have to show them that you dont deserve pity by yet-accepting the disease and fighting for it. Go ahead, win the world and everyone will b at your doorstep. When a friend of mine being thal did Masters' he was referred to be an example for all other vagabonds in our family and the elders commending him now were themselves pity to him before he showed them how to live a life. Dont put much attention to these relatives-- the life is yours and I damn care about those damn relatives who cant even judge a person. Live your life, let them remain in their illiterate world but you do move forward leaving them in dark ages.

As for their point concerning marriage is, in our society there are many girls who face such ignorance even if they are normal. Say if a girl is from poor family or isnt attractive or isnt much educated, though normal,they are rejected. You live your life, be happy , work and enjoy, inshALLAH one day you WILL get married and why not?If you pray to Allah HE will surely bless you with what you ask.Dont you believe in it? Then do its a matter of our faith.

I know thalassemic girl in lahore who despite having thal maj and all relative complications was married and now have two healthy children. The point I avoided to say directly in previous post but, as you’ve removed curtains from it  :wah lol, if all thals here in Pakistan can get people change their minds, overcome ignorant attitudes and get happily married, then, the society in which You live the place where you live has more broad intellect people.

I have many other Pakistani thals in and outside Pak, living happily with children, or even without children. See the point is living happily and satisfied.

Summing up, Easha , your efforts being a thal clearly show you being a very competent lady. Just don’t pay attention to what people think. Life is yours and only what YOU think is what really matters. Proceed in life, mark your goals, get them done and pray to Allah. Show that you are a thal and how you are RULING thalasemia to these people. Just a little bit of courage and success along with those moron people will kiss your shoes and yes definitely you will find a noble husband for yourself as other thals do.

Laura:
Hi!

As wrote in other posts, I like the people who I live next to to know it. In my case, all my family and friends know about it because I feel more confortable in this situation. I just feel that I'm being more "honest" if I don't hide such a circumstance. I don't explain it when I meet someone, I just do it when I feel I need to tell that person about it.

But, even if I prefer explaining the situation, not everybody who knows me knows about my thal. At my work, only the people who work hand in hand with me knows about it. At the moment I don't have that need of explaining it to non direct bosses, etc (and honestly, I don't think I'm going to have it in my life).

Well, sorry for being so long, I just want to reflect that each person knows about his personal situation and relationship with his relatives and friends. In my case, I feel better if I talk about it but I don't do it with everybody. I can understand that other people could prefer trying to ignore thal and live as if they were not affected by it. In fact, my mother has done it all my life. She didn't explain what my thal was about to her brothers and sisters and neither did she tell her friends. She just felt better that way.

Kisses,

Laura.

 

Zaini:
Eesha,

Yes i also know people here in Pakistan who have thal and are married and have kids :yes so yes,change is coming,slowly but still its coming :) .

Zaini.

patel.1005:
When I was little, my parents informed alll my teachers at school about me having thal, and I always felt as if i was treated a bit differently then other children. As if I was more sheltered then everyone else. As I grew up and got into middle and high school, I still kept the school informed that I had thal, but I didn't tell all my teachers and friends about it. I just wanted to be normal. My very close friends still knew about it because I was out every three weeks for the transfusion, but I never really talked about it with any of my friends, even those who were closest to me. As I got into college, I began to open up to my friends a little more. I still don't tell everyone I meet that I have thal, or even that I have any blood disorder. There are people I have know here at OSU for three years now that have no idea, but I dont hide it either. If it comes up, which in a normal conversation it usually doesnt, but if it does, then ya I will admit to people that I have a blood disorder. I still hate telling people because I feel that as soon as I tell people, I can almost see in their eyes the pity, and the relief that its not them.

thal is such a big part of my life and I feel that if i dont hide that part of me, it will become my identity, just like you said eesha, and I don't wnat to be known as Beta Thalassemia Major. Its especially hard because at home with my family, especially my parents that who I am. I am Their daughter, beta thalassemia Major. When I visit with extended family, the first and maybe only thing the ask about is my thal and my treatment, and whether I still have it. My brother and my cousins and the younger generation in my family is a little different, they do see me as myself first and thal is just a small part of me to them, which i am forever greatful to them for. It may just be a generational thing.

In september I am finally moving out of the house and going to Chicago to finish my undergraduate degree in Respiratory Therapy there. Will I tell the people I meet there about my thal and be more open about it? I don't know. I hope I can be more open about it, because I know that thal is nothing that I have to be ashamed of, I just feel that it is unfair that I have to work twice as hard as a nonthal to make an identity for myself that is Beta Thalassemia Major.

eesha:
thanks patel i think u knw what i feel, seems we have shared experiences., everything what uve said matches me.

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