Psychological Issues of Thalassemia

Umair
 

Although no one can take away what you have endured - we can congratulate you on getting past it and assure you that you will never go through anything alone.  We are all here for you.

Feel free to share whenever you are ready,

Sharmin

Sharmin,
Thanx 
Sure, i will ... whenever i got some courage to recall all that  and to look back in my past ....

Umair

Umair,

It is far more important now that you are looking to your future. 

Andy ,
yeah its important now to look forward  instead of looking back and start feeling bad for wat  i have been through ... you're right, buddy , it is  wat called  fine n positive attitude  ....

Umair

very important post from sharmin.

 I faced all those difficulties thru out my life ... at first it was over-protectionism by parents and teachers ... i mean such things "dont play that dont do that " when actually i wanted to do all those things. Relatives comments on me and my health -- i really hated and thats the only thing that made me aggressive and angry. Whenever any1 felt sorry for me atleast infront of me, it really aggravated me. Then came the issue of height as i had small stature. Thalassemia really didnt bother me myself but yes height did. School n college wasnt that tough and could bear my absents. Until i enrolled in university semester program where attendance 80% is compulsory ... here's when i got to hav real guts to cope with everything and in country which is not even my homeland and away from parents. Coping transfusions, arranging for donors travelling 6 buses daily for university and fulfilling attendance requirements was not an easy task. I remember when i completed my High School and wanted to go Pakistan for study .... wut my parents  and relatives said really made me furious , they all wanted me NOT TO PURSUE further study and just do a small seated job or even just sit at home , but what all they said was just cuz of thalasemia so that i may not incur more problems ...but I didnt take that to pin down my mind ... i actually used those words to fight thalassemia itself .... and today after my MBA i really ask my mom whether i was right then or not, and they are really happy now.  Similar comments when i started weight lifting and special diet.

Long story written just to conclude that physical issues can b taken care of ... but psychological health is wut really matters... world heroes conquered the world not thru their power but mental power. The difference between a martyr and one who runs away from battlefield is of psychological power only ... For best physical health and life quality ... we need strong thals mentally

Waleed,

Your story gives much inspiration to others. The lesson is, believe in yourself and your ability to do the things you want to do. Don't let the opinions of others keep you from being everything you want to be. I've known you for some years now and was impressed with your confidence and strength of will when you were 17, and I have to say I am not surprised one bit by your accomplishments. I am also quite impressed with what you have done physically. You are showing there are no limits for thals as long as they believe in themselves and have the confidence that they can succeed.

By the way, my mom's parents were both 5 feet tall and she was 4' 11'. My niece is even smaller. There is no reason other than genetics. Short people pass those genes on. There is no reason to let height be a deterrent to anyone's life.

That's my life experience, too. Don't let thal keep you down, you can do whatever you want if you are up to it, if you want it too much. We only need to act a little differently from "healthy" people and take into consideration certain things, but other than that there are no limits.


Good for you, Waleed. Considering you have to fight with traditions and prejudices in a country where thal is not in everyone's everyday life, you have managed things perfectly. Congratulations.

Lena.

Now that my agressive chelation therapy is coming to an end I finally have full sight on my life. First I was very scared, because I was in this therapy for more than six years. I didn't succeed in keeping my old friends and making real new ones. I gave up my youth, but I have my life back. I never really believed I would succeed in this therapy. Yes, the iron will be always there to annoying me, but I am it's ruler. Now it's the other side round. 
Now that I have a full look at my life I understand I must do scary things to let my dreams come true, to grow stronger and enjoy my life.
I know that people without this extra thing believe I became crazy or so, but I know that this the secretly behind life, that this it. I can't express my feelings really well, but I hope you understand a little from what I tried to say.

I know setbacks will also be around the corner, but never try, never win and never became stronger.

Thank you all from the bottom of my heart. 

I'm ready

lots of issues , lots of problemes , lots of critical time , lots of ups and lots of downs  comes in the way of a thal ....  cant write all , and failed to select a few onez out of all ... every prob everything seems very important to share ...  i have shared alot .... and still have enough   to share .... you can say that a thals life could b full of problemes  if he/she dont care of his/her self for a few years of life .. so , never compromise on ur treatments .. for thal parents i would like to say that never treat thals like they have  somting ..  never forgive thals n get angry on their siblings for the same mistake , this will catch away the taste of making mistakes ;) ... so,  if u want to see them enjoying the life n mistake ( mistake sey mera matlab shararat hai ;)  ) , let them enjoy their life on their own, like their siblings , dont over protect them just let them go ahead  ....  also dont b soft with them more than their siblings ...

Umair

just after the diagonosis of thalassemia in Najaf, the way our relatives and all the people around reacted was very disappointing, they had the feeling that our and, especially of Najaf fate was crushed, i knew this was all stupid and i stood against it...........

within a week after diagonosis, everyone was pampering Najaf, having a very close look on her health and growth, giving stupid comments in front of her. and all this made Najaf very frustrated, inconfident, she became shy, her mischieves died........
whenever we say "blood, test, doctor" in front of her she started weeping, everytime she was telling her mother that she would not go to doctor. whenever she was put in front of doctor she started crying. all i want to say is that special care should be taken of children, if a child is brought up with such a mental state, will he fight against thalassemia as he is supposed to do?? i dont think so...

right from the beginning, the thing that made me the  most worried was the psychological and psychosocial issues. and i thought it would be easier to fight against thalassemia than social and psychological problems especially in our environment..

now we have taken care of this issue and Najaf is doing well.........


Abbas

Abbas,

You did a good job and you are right about how less people know about this disorder and how they start commenting without knowing anything about it,the key is to be strong and give your child that confidence to do anything in the world,never panic infront of them,always be composed,no matter what,and never let them think that their is something "wrong" with them or they have any kind of "problem".As they say "Shoot for the moon,you might not reach it,but still you'll land among the stars" .

Zaini.

just after the diagonosis of thalassemia in Najaf, the way our relatives and all the people around reacted was very disappointing, they had the feeling that our and, especially of Najaf fate was crushed, i knew this was all stupid and i stood against it...........

within a week after diagonosis, everyone was pampering Najaf, having a very close look on her health and growth, giving stupid comments in front of her. and all this made Najaf very frustrated, inconfident, she became shy, her mischieves died........
whenever we say "blood, test, doctor" in front of her she started weeping, everytime she was telling her mother that she would not go to doctor. whenever she was put in front of doctor she started crying.

I cannot believe the state of mind these people were, what a pity.

Good for you that you have taken care of everything.

dear CF,

all this happens in societies where people are less educated, this also shows that they dont have the courage to fight against the disasters.......
but Insha Allah we will fight against everything that hinders the way of Najaf.........

Abbas

(msg in local language because it contains stronger expression, plz pardon)

Sir g koi tension lene ki zarurat nahi ,,, ye sirf Allah ka imtehaan hai aur umeed hai aap is main paas hongay .... aap kay bachay k liye to boht achi achi oppurtunites hai aur ab to thalassemia ki medical treatment boht boht behtar hogai hai. Hum jo iron pump se nikaaltay thay aaj oral medicine yaani goli b aagai hai so ghabraanay ki koi baat nahi beshumaar larkay larkiyan thalasmia k hain jo k bilkul normal aur theek thaak parh rahay hain yahaan tk k maa baap or ek to dada dadi bhi bangay hain... So ghabranay ki zaroorat nahi inshALLah Allah behtar krenge bus bachi ka iron control rakhyega baqi sab Allah pe chordayn aur rishtte daaran di fazool gallaan tay dehaan nahi dena -- maghro lao ayho jay rishtay daran nu ...

Waleed,
i do agree with u, thanks for words of hope...