opening up

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.

Hi eesha and welcome to the site

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

manal

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.

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

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.

i never feel bad to disclose that i m a thal .. n  i think its better to tell once and face that once than keep trying to hide it aal the time... if people around u care's abt u they will help u in ur fight and other will stay neutral on this issue .. it will also help u seprating sincere friends and just friends.. thats wat i think .. decision is urs ,, its up to u and ur situation . but i never hesitated to disclose it .....

Umair

  Welcome!    it's not like we are embarrass about it ( having thalassemia) but in my opinion Canadian_family is right ppl should know just in case. Not many understands it( the disorder)  but they should at least aware there are such disorder.....

Well. i never concealed it and infact always felt it intersting telling others about my disease since my childhood. People are different and so am I. But I have a strong reason for that, im genetically a very open guy  and even tell things that i shouldnt but anyhow. My confession had always been beneficial for me...whether it college university or gym. Yes, people do feel pity for you as you said but as soon as they get to know you they really respect you and take you serious for the struggle you have been making through out your life against thalassemia. Poeple i've met or to whom i got the oppurtunity to aware them about thalassemia really took thals as the braves one. It had ALWAYS been helpful for me to tell my friends and teachers about my disease. My classmates and university fellows were almost all my donors for 4years BUT having said that they were that spirited people who would FORCIBLY donate me blood. Eesha dont get desperate by thinking that people would remain reserve or mean with you because you are a thal. I know many thal majors that are seen as mentors by other NORMAL people and they consult them for their personal life matters and in general. I know of two thal majors getting happily accepted their marriage proposals after telling their complete and clear history of thalassemia. Yes, right after you tell them of being a thal their eyes pop-up like an unwanted pop-up window, but as soon as you'll explain to them wisely about the disease and your lifestyle I bet you they will turn in your favour. I assure you to have better positive responses as you live in more open literate societies. We all have already been much affected by thalassemia in our lives, be it school playground, heavy crowd, adolescence and romantic life, activities demanding heavy stamina this that blah blah …BUT want to make sure that thalassemia shouldn’t be to make yourself hide what you actually are..not let it deprive you of very your personality and the very true nature you were born with. Yes I am thalassemic, but I am confident that I wont let it rule myself. For us thalassemia isn’t a disease but a way of life. Why conceal the disease or be shy about it when God made you that way? Why would you be any how discriminated on that note? Make them know  ‘I am what I am..and if others have problem with me please stay away because I don’t want my precious time to be wasted on morons.’

Just be yourself. Don’t let thalassemia put you into identity crisis. I’m proud that I’ve met yet another thal like you who shared her inside out. Be confident what you are. Stand tall. Why conceal? Get the attitude -- Yes I’m thalassemic…but I’m not a bed ridden patient !

well said , Waleed .. i agree to u ....

Thanks for all ur comments, but u kniow its difficult to explain people do see you differently when they knw about ur thal, work collegeues, school, people feel sorry for u, i dont want that i wnat to be normal. I dont thal to be my identiy, my ID is EESHA not THAL, thats why i hide away from it and then i feel normal .
Relatives that do know including family think u have thal and feel for me, they have seen me succeed in education andd work but in social side they think i cannot go fwd like marriage etc due to the condition, it frustrates mee how do educate our pakistani community.
Out of interest nay pakistani thals married here?

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  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.

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.

 

Eesha,

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

Zaini.

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.

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