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telling people about thalassaemia

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Offline eesha

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telling people about thalassaemia
« on: October 16, 2007, 07:51:26 PM »
Hi
I want to know if anyone else has this problem too. I find it very hard to tell people about my thalassaemia. I always hide it I dont tell friends or work, I dont know whjy i hate talking about it i like to ignore i have it when i am with other people. I dont disclose it to friends and work as i feel i get treated differently if people know, i know they feel sorry for me and i hate it. this way i can be normal if no one knows.

am i being a bad person by not telling people.

i have just started a new job and when asked about any medical problems i said no i havent got any, now i am wondering whther i should have done that, should i tell them, but i dont want anyone to know, because i know i will get treated differently and i dont like talking about it, i feel i can escape from it when people dont know.

does anyone else do this?
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Offline Smurfette

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Re: telling people about thalassaemia
« Reply #1 on: October 17, 2007, 02:20:44 AM »
Hi Eesha,

NO!!! I have never had that problem of hiding I have Thal Major!!!! All my relatives and my work collegues know I have to go to the hospital and what I have...I dont get treated differently either..cause i have told them not to treat me seperate than others...

I speak about Thal openly to anyone who wants to know and wants to learn more about it too...I am educating people....

If your not possitive on your outlook in life well you will lead a sheltered life..I have always looked on the brighter side of life and I am most of the times optimitstic as well....I do sometimes get sad..but thats normal..

Most of the times I am happy...

Hope this helps
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Offline EMommy

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Re: telling people about thalassaemia
« Reply #2 on: October 17, 2007, 04:22:41 AM »
I am really glad to see this topic because I often wonder how our daughter will feel about disclosing her condition to others.  I don't tell everyone about her Thal major because I don't want people to feel sorry for us.  People sometimes look at us with "that look" and I know they are wondering if we knew she had this condition before we adopted her.  Meanwhile, I feel like the luckiest Mom ever to be blessed with her in my life.
I wonder how it will be when she goes to school.  I don't want her to be that "kid with that disease" that people can't even pronounce.  I don't want kids to make fun of her.  I don't want nosey strangers to ask why she misses school sometimes.  (she's only 19 months yet)
I think that it seems "normal" to want to talk about it and also "normal" to not want to.  People have different personalities. 
How about the parents out there?  I know there are some people that should know, but where do you draw the line and let your child decide who s/he wants to share this with?
I am NOT saying that this disease is something that people should be afraid to talk about, but I do see the point about just being the "average joe" at the office. 
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Blessings,
Rebecca
Mom to 4- Two Beta Thal Major (chosen)
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Offline Lyanne

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Re: telling people about thalassaemia
« Reply #3 on: October 17, 2007, 04:55:46 AM »
Hi! Eesha,
    I do understand your dilemma, though when i was young my sister and I never hidden the fact that we are thalassemic all the people in school when we are in elementary and highschool knows our activity (every month of blood transfussion) that every so often we missed school for it, and we don't join certain activity at school that could harm us like especially ball sports........ they may not understand it but we do explain it to them over and over and so my sister and grew up to be known as having " special illness".
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LYANNE :yahoo
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Offline Smurfette

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Re: telling people about thalassaemia
« Reply #4 on: October 17, 2007, 05:31:18 AM »
To all who replied..

You tell people that you dont want them to feel sorry for your daughter or yourself..I do that...I tell them not to feel sorry for me..because there are much worse out there than me having thal....

I tell them to feel sorry for themselves cause they dont know what will be around the corner from them one day...i dont know either..but i dont feel sorry for anyone.....We all have our ailments and we all have to deal with them as best we can...

enough said I think.
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Kathy11

Re: telling people about thalassaemia
« Reply #5 on: October 17, 2007, 07:59:44 AM »
I think that we do need to tell people, that we interact with , about thallassemia, the awareness is essential  for a better undestanding and to improve  acceptance in our communities, towards people whom is suffering  from  this blood disorder,

It is always good to be honest  at work especially when we give informations about our health, ,
E:G  Because,
(If one has an accident and is in need of claiming for compensation from insurance. Honesty is the best policies and the responsible thing to do).It is also an offence to not give accurate information.

Its bad enough to deal with the illness ,therefore  try to make it easy
on ourselves be open and live with a clear conscience.we dont need to worry about who know s about us, its not a shame to have this disorder
Try to think of the ramification of our action towards   future generation ,and let us advocate to stop the shame and secrecy about Talassemia.Lets  take part in making a difference in our society.
good luck
Kathy
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Kathy11

Re: telling people about thalassaemia
« Reply #6 on: October 17, 2007, 10:12:18 AM »
Dear Emmomy,
I feel that if a child is brought up in a loving home with loving parents and preper guidance he/or she will be well
equiped to face the wide world and all its kind and the child will be secure and can face whatever life presents.
So dont worry too much about the outside just love your children  the best way you know how and everythings else will fall to place. I'm so proud of you.
Kathy
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Kathy11

Re: telling people about thalassaemia
« Reply #7 on: October 17, 2007, 10:14:34 AM »
the word is proper
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Offline Zaini

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Re: telling people about thalassaemia
« Reply #8 on: October 17, 2007, 12:47:25 PM »
Kathy,

you are right ,but the thing is,i also wonder sometimes like Rebecca ,and i do feel like eesha,it's not easy here to share this information with people,they won't understand,they don't know much about thal other then thinking about it as a fatal disease,and ofcourse they'll feel sorry and will try to be sympathetic,even when i tell people that thal now a days i a manageable disorder ,they don't believe me,they look at me like "oh look at her ,she is just trying to show she is not worried",and ofcourse i don't want my daughter to be treated differently,we treat her at home as same as we treat her brother,so there are selective people who know about her condition,our immediate relatives,and her teachers of course.

ZAINI.
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^*^Xaini^*^
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Offline ThalGal

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Re: telling people about thalassaemia
« Reply #9 on: October 17, 2007, 01:36:46 PM »
I believe that this is a very personal matter, without any wrong or right way to go about it. 

My family and my close friends know about my having Thalassemia.  I choose whom I tell; I want people to know me the person, since Thalassemia does not define me, nor is it the most interesting thing about me.

Thalassemia is a part of my life; I go for blood transfusions, nightly infusions of desferal 5x a week, a handful of tablets etc., but it’s not my whole life.

A support system is very important, and mine has been wonderful, from my parents, my husband, to extended family and friends.  Also, being involved with an association, attending conferences, being pro-active is key.
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Offline Canadian_Family

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Re: telling people about thalassaemia
« Reply #10 on: October 17, 2007, 02:54:51 PM »
You have touched a very sensitive issue, I think it all boils down to the society you live in or kind of people you interact with. If the people around you listen and understand and treat you no different than there is no harm in discussing Thal with them. On the other hand if you know the people around you will give you "the look", "sympathise" or "make comments" than you do not discuss Thal with them. On discovering my daughter's Thal we made some rules and abide by them religiuosly so far. The information on her thal is disclosed on a need to know basis only (e.g. Dentist, Doctor, School Teacher, or my boss); we do not discuss her thal with friends or our relatives (they have no concern to know and beside they can't do anything about it). We know at some point in time in future if my daughter decide to disclose her thal but until than we are not saying anything. We are raising my daughter as a normal child, she is treated no different than her brother and we are giving her confidence to face the world herself.
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Regards.
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Offline §ãJ¡Ð ساجد

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Re: telling people about thalassaemia
« Reply #11 on: October 17, 2007, 03:59:30 PM »
:exactly

No two people are alike. Similarly each group has it's own perception. It is O.K to discuss it with doctors and teachers as they can understand it to some extent. However, if a common person that you are dealing with in the daily life has no concern about it then you can leave them out in the beginning then gradually introduce it to them as if you are talking about someone else before finally revealing to them when they fully understand it that you were talking about your own self or your loved one. For example, to your colleagues and co workers etc.

It's not that easy, but you have to figure it out how a person will behave and are they worth telling unnecessary details.
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اَسّلامُ علیکم Peace be Upon you
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Offline mrtariqkhan

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Re: telling people about thalassaemia
« Reply #12 on: October 18, 2007, 12:34:07 PM »
I will have to agree with sajid here.. it is really not necessary to tell it to everyone. but me being a father and a greedy one , wants to get as many prayers for my daughter as possible ( so i tell it to my friends and anyone i know who would be kind enough to remember her in their prayers) ...  just helps me to know that someone is praying for her besides me and my wife- otherwise i keep it to myself.
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Offline Ambika

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Re: telling people about thalassaemia
« Reply #13 on: October 18, 2007, 01:13:00 PM »
Hi Eesha
I think one should not hide(mainly the medical probem if any) anything if it has been asked specially . And one should not think that what the other person will think about yourself  this guy or gal has this problem If they think like this than  according to me thay are not the true Soul by heart and they are not medically fit by their mind . instead of showing sympathy towards people like us they have to praise  us that still we are living are live in full without any complaint to any one .

so don't worry what other think always think that we are the Chosen one from god side and very close to him.

with thanks and regards
Rupali

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Offline EMommy

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Re: telling people about thalassaemia
« Reply #14 on: October 18, 2007, 02:04:15 PM »
Mrtariqkhan:
I just have to say that your little girl is SO beautiful!
 
Everyone, thank you so much for offering your opinions.
 
Our children are such precious gifts.
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Blessings,
Rebecca
Mom to 4- Two Beta Thal Major (chosen)
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