revealing the "secret"

Hello again.
I am from Greece.
Here there is a lot of prejudice around thals.
They still have the image of thals as they were 30-40 years ago.
And yes,30 years ago,before desferal,pills and safe trafusions,things were quite bad for thals.
Nowadays,things have dramatically changed!
If you dont explain this to people,they ll never know
Yes people are cruel and some of them may not accept the difference in you.But there will be more than enough who will.
Do you think that "healthy" people as me dont get rejected?
As for the tiredness,i am a smoker and i get more easily tired than my bf

I competely understand u Red. I think I am in the same shoes during my whole life.  All people are different and so they feel in diff. way whether they shoul talk about the disease they have or just not.
Well... I am 20 years old and during all the years I have never shared the truth that I have thalassemia with other people except my family and my relatives.
At first u may think it's quite strange and it is not normal to keep a secret that u have thalassemia. But , actually I have realized that telling other people about thalassemia in most cases do not help you, what is more u feel more depressed after that - because of their reactions or questions , for example.

I just wanna tell  u that there are many people around us that are not aware at all about what is really thalassemia as a disease. And if u share with them that u have it, that u need blood every 3-4 weeks , that u use desferal or other chelation in order to release you ferretin level.. all these things might seem to be very shocking for them.. It is inevitable that they start looking at u from an other angle... sometimes they start unconsciously avoiding you or start oversympathizing you.. You see their reactions, you see they're afraid and confused .. and all these things may depress you more than if you have never explained them about your health condition...
A girl with thal. like  us has told me that experienced a very sad situation, where she knew people were discussing her , trying to make some stupid assumptions about her future life and life length.. It's really awful to hear people perceive you in such way and talking such things about you....

SO, THAT is why my opinion is that it is not needed to walk and tell all the people you know , that you have thalassemia.. on the opposite , you should share such things with your family and your closest friends. because others are not competent about the disease and they cannot help you , they can only hurt you more..

To Rozitka
I understand what you are saying and agree with how Thalassaemia is perceived and people's reactions are varied but I am saddened by your view of being hurt more by others.
I know it does happen but we should not be worried about what others are saying. I have been through that in my childhood and I know that children can be very hurtful but I also know who my true friends are. Yes some people are shocked and some may change how they treat you.
But I have learnt through trial and error that if I want to treated no differently, then I need to either say so. People who find out now, ask me questions and I answer with a smile on my face. They comment on my attitude and I reply that there's nothing special about me, I smile because I am happy. If you don't know what life is like without needles and such... then you have nothing to miss.
Life is what we make it.... Life is too short for me to worry about others thoughts of me.
I have people who love me for being me and is all I need, don't you think? 

To cherieann
well,  I agree with u to some extend... but actually it was just my opinion.. because many doctors say talk about your disease with people, explain to them..  but I think that not everyone can really underrstand u..
Actually, I think I'm quite a happy person knowing that my family and friends are with me.. my boyfriend is loving me.. they know me quite well , they know  I have thalassemia and they really can help me in some difficult moments because THEY KNOW HOW to do it.
 What about the others?? How a man for example can help u in some way?? Is he competent with this disease, does he know what it is really ? why u need to explain such things to people that are totally unaweare of what is really living with thalassemia as they can't be of your help because of their incompetence, they can't even understand you ...
I think everyone feels to whom he/she can be trustful and I have find the ones I can.. and I have some bad memories of those who could not ..
 

Rozitka,

My personal opinion is the same as yours.  I think that a person's medical information and files are private and confidential for a reason and no one should feel the pressure to share their medical info with anyone unless if they are comfortable.  Thalassemia is not a well known and understood disease in most parts of the world, and the health of patients varies greatly depending on the care that they have received. 

We spend a lot of time educating ourselves and living a life of confidence and positivity - while fighting a disease that is challenging.  For some people the additional challenge of people's negative reactions is okay and for others it is not necessary.  We share little A's condition with close family members and friends and everyone else on a need to know basis - such as his teachers and school.  I haven't found it necessary to stop people on the street - shake their hands and say - "hi meet my son, monthly blood recipient".  Frankly, I think that he has enough to deal with and he does it very well - I like the normalcy in his life from everyone not knowing.  I don't think he needs to deal with teasing, feeling different or needing to explain anything to anyone who doesn't need to know his medical history in the first place.  Also, I would not want for someone to search outdated information and bring it to him - telling him that his prognosis is what it was believed to be 30 years ago.  It is important to me that he receives his information from trusted sources like us and medical professionals.  My own extended family, knowing that he had just one transfusion tends to treat him very differently - often they tell the other kids to not play with him as it will "wear him out because he is too weak", when my son hears this he is almost in tears.  How can a little bit of play wear him out if he plays 3 hockey games a day?  These words often leave me bruised too and I would rather not have to hear them. 

I know that opinions for this topic vary greatly - and everyone handles things differently.  I support those who like to share and those who prefer to keep their medical info private and share with trusted ones.  It is a matter of choice and comfort level and says nothing about your courage, sense of pride in all that you are or your desire to raise awareness about this disease. 

Sharmin

 Well said Sharmin
To Rozitka, I do not mean to upset you as I do understand and agree to some point. We are all different and similiar with how we cope with Thalassaemia.
I just get upset if I feel you are making choices because of what you hear and not from what your heart tells you. We have instincts to whom we can trust and that it our right to say who we tell or not. My husband is very vocal of what I go through to the point where he will tell his friends or others off for complaining of trivial things. We have beauty disscussions about whether he should be letting people know of my personal stuff. I know he is proud but I will always feel that it is my right and choice to decide who knows or not as Thalassaemia is personal to me and only special people I trust will know if and when I am ready.
Sometimes when people find out and start reacting differently it does upset me but then it makes me mad to the point where I will strive harder to live life to the fullest.
My attitude is always not to let other's opinions stop me from being me.
To all my friends out there..... Be what you want to be, choose how to make it happen and don't let anyone stop you.
We are all special and each of us has a story to share, and advice to give but at the end of the day..
We are responsible for our own happiness and selfcare. Let this be what helps you with your personal decisions and not just because someone told you too.

To Sharmin
I felt your words as I went through that as a child.
Not all my family knew what I had, they only knew I was a sickly child. Back then I was the only Thalassaemic in New Zealand receiving transfusions. There were only a handful of Thal minors too.
I wish we could make the world a happier place where we don't have to put up with that kind of talk but the world will always be full of people with their beliefs whether they are right or wrong.
I only hope that you and your wonderful son know just how special you are to us.
Through you, Little A is a positive influence to us all and one day he will be the image of Thalassaemia. - A go getter who lets nothing pull him down.
The pain will lessen and one day you both won't hurt as much with the comments.
May Allah be with you both.
(Did I say that right?)

Cherieann,

Thank you kindly for your words    I have always admired your courage and your attitude, I also admire the way that you live your life.  You are a true inspiration to the children that you work with - and to my son.  Reading your posts will make him a better person.  Just like you - and the other adult thals on this site - I hope that he helps other thals live full and happy lives. 

I wish you and your wonderful husband every happiness in the world:)  You are right, some people come into the world to make it a better place - they look for words to soothe someone's wounds or to make them feel better - others seem to be here to bring people down and emphasize other people's weaknesses.  I think that we need to make a choice about who we are going to listen to:) 

Thank you ever so kindly - I am Sikh by religion - but I would feel very fortunate to have Allah, Christ or any other form of god with my son and myself - I wish you the same my dear 

much love,

Sharmin

Cherieann & Rozitka,

I think that this topic is a very important one in thal and I am glad that we are discussing it.  You are both very special ladies and we all have a lot to learn from each other's opinions   I have a lot to learn from you as a mother of a young thal.  Thanks for sharing 

Sharmin

Oh Sharmin,
You are the person who uses words to soothe. I had tears in my eyes as I read your comment but now they are flowing as I read your last comment.
God blessed me when I found this site. You are all inspirations to me.
Each opinion expressed whether I agree or not gives me a different way to look at everything.
I try to teach my husband and niece that there is never one right way but always different answers to the same question. Wisdom is knowing which is the right one for yourself.

So true my friend - wouldn't it be great if everyone could understand that?  That there is more than one right answer and that we all need to chose the one that works best for us - or that is in line with our values? 
Thanks for that Cherieann

I have read all your messages. It made me feel better. Thank you 

Oh, I have just read your comments on the topic and cannot explain how excited I feel now..
You have told wonderful things and  both sharmin and cherieann  have helped me a lot.  The things you have mentioned made me think in more positive way as  I have changed something in my senses and now feel things differently. I think we should fight for our own health and believe things are going to be alright. Wish all the best and please take care !
P.S I'm glad to have talk with you. I am totally convinced that here, on this site, we can be of great help to each other-as we give advice and share problems.
Thank you!

I agree with Sharmin totally,i share my daughter's information on need to know basis,people whose comments will leave me and my daughter feeling miserable are not welcomed to share this precious information with us,although i'd be happy to share this with every one but problem is people's attitude towards thal,they think of it as a fatal disease,which is definitely not true.

I just can not stand pity in any one's eyes,for my daughter,she is not pitiable,she is enviable,she is doing great in every aspect of her life Mashallah.I don't care what people think but i don't want their negative comments to leave a negative impact on my daughter.Last time when we went for transfusion,their was a father who kept saying "these children this,these children that" and it irritated me like hell,Afterwards i told my husband what's that "these children" supposed to mean ? Children are just children,you can not classify them due to their dis order ,thal is not what signifies my daughter,it's her courage and determination to live a happy life,which does.

Zaini.

 

Sharmin