Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: eesha on October 16, 2007, 07:51:26 PM
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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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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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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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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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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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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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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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the word is proper
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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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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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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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: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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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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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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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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This is an interesting topic that has been brought up previously. I would like to note that in our current discussion, it seems that more people are willing to be open about their thal, and I think this is a good trend. Although one's health it is not anyone else's business, when it does come up, if at all possible, people should try to be open about thal, as the opportunities to educate and create awareness about hemoglobin disorders, should be exploited. Only by creating awareness of these widespread disorders, will we be able to help prevent them from happening and also get the necessary attention to attract the interest and funding necessary.
Lisa was very open about her thal and never tried to hide it. As a young child in school, she asked other students when they got transfused, as thal was the norm for her and she thought everyone must be getting blood. Everyone knew about her thal and no one thought the worse of her for it. When she became seriously ill, her employer, the Rochester Police Department, through the efforts of our now Mayor, Robert Duffy, made sure that Lisa continued to receive her pay once she could no longer work. This would not have been possible if Lisa had hid her illness.
However, I need to point out that not all cultures are so accepting and in many cases, hiding one's thal may mean improving chances for education and employment. It was not long ago that we had a discussion about the "stigma" which is what thal is sometimes called, and we learned that in many places, this "stigma" is still very much alive and causes great problems to thals. In these situations, it may be prudent to keep one's thal private as much as possible, even when trying to create awareness. Each parent or patient must weigh the different factors involved before announcing that one is thal. What might be fine in Chicago may create ostracizing in a less accepting culture. Our goal, of course, is to create a world where anyone can openly reveal any medical condition without fear.
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I agree with you Andy, for most it is a calculated guess of their environment. Be open as well as passive in certain situations.
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Hi
Am as a father of X-thalassemia child i never feel shy to talk to other PpL a bout my experiance with the thalassemia..... opposite of that i feel proude that i learn my self how to protect my child and also to explain to other couple who want to get marry to go and make blood check ...any way this is my disteny i can't change it :dunno just be happey and life as you want and make love not war :hugfriend :biggrin
khalifa
one for all and all for one
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:clap good one KhaliFa.
Its good to feel comfortable in one skin.
Kathy
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Rightly said by Andy- cultures is the most important factor........
Emommy - Thanks, thumbs up to you too may God give all the happiness to you and your kids... kids certianly are the best of creations...
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i dont knw guys i think its easier said than done about telling pple about my thal. i have always hidden it i mean when it was in my pernts hand they told my school and everything, but i didnt tell my friends. as i was only off school once a month i would make up an excuse although the school knew, i didnt tell any fellow pupils. since i have started work i have never told my colleagues or my boss as i have worked part time up till now so i didnt have to take days off for transfusion and uni was flexible timetable so i dint have to tell anyone ther either.
if someone asks me i deny it. i dont knw why i feel like this. i accept i have the problem and i do all my treatments but it is all in my private life. all my relatives obviously know, but i hate it when really distant relatives come and they say oh is she the girl that has blood and then they pity me and feel sorry for me, but my close rels and community treat me like normal.
but i still have that dilemma of how do i tell work now that i have said no i dont have any medical problems. i have only come across this problem now coz this job is full time , even though i have arranged for transfusions on weekends i am scared there will be a situation or an appointment that i will have to attend and with wrking full time i will have to tell them.
i still dont want my coleagues to know, but just for it to be on my record in case anyhting happens.
i dont knw how to approach the boss and tell her as she is very stern and will really shout at me for not telling her before,. so can anyone help???
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Hi Eesha,
The best thing for you for now is to explain your colleagues in a strategical way that they won't go off saying "Why didn't you tell us earlier?" when a situation arises.
First of all tell your boss about it. I hope he is an educated person with some respect for other people when confronted for discussing a personal matter. So approach him/her by saying that you have something important to discuss and give him/her a brief hint that it is related to you and could need some special considerations when a situation arises. Similarly do the same with your close colleagues and ask them not to make an issue of it since they will discuss with each other in your absence. Tell them to spread the word (if they decide to discuss) in an awareness kind of fashion and redirect the people to you so that you can clear things up much better.
I know it is really hard to do this but you need to gather all the courage you can get. Furthermore there is no rush to do it all in one day with a BANG. Start with your boss. You really need to do that as soon as possible and then move on to the colleagues when you think you are ready for it.
Remember, it's the first step that is the hardest one.
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Eeesha,
You may be protected by law from any repercussions if you admit your thalassemia. I know this is the case in the US and is most likely the case in the UK. Employers in the US cannot terminate an employee because of a health condition. You may want to check this out before announcing your thal.
Also, don't think that people will necessarily feel sorry etc. as thal does not have the same stigma in the west that it does in many other places. It is considered a manageable condition and should be explained as such.
Above all, what you tell anyone is a matter of your own decision about your privacy and it is really no one else's business. It is up to you what you choose to disclose. I think ThalGal's advice is very good here. It should be your choice and only yours, what you decide to disclose.
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Hi Eeashs.
You have few option at your disposal.
Think was is really important to your well-being and peace of mind.
you could either write a letter or make an appointment to talk with your boss ,about your illness and your concern and your fear of discrimination as regard to your condition.
you could also think if, It is worth working for a boss that is stern and hard to approach,
you need to know that you are a valuable member of this work force too, you bring your skill which is very valuable and you need to be consider,
Have faith in your capability, do what is best for you ,
you deserve to have peace of mind ,work without the stress of the secret you carry, I hope you decide to do the right thing for you.goodluck.
Take care Kathy
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Andy, you are correct, there are laws to protect employees from repercussions.
However employers (especially in the corporate world) have become very savvy, they may not terminate you for your condition but suddenly your quality of work comes under scrutiny, even if it’s the same as before they find out about the thal.
I believe if your condition (any condition) does not affect your work or prevents you from doing your job then there is no reason to tell, unless of course you chose to.
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hey guys
thanks for ur advice
its noty the discrimination im worried about i just know pple will feel sorry 4 me. so i am gna find a way to tell my boss first and tell her to keep it confidential then its up to me hwo else i tell.
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Good going Eesha,
I'm sure that you will feel a lot better and confident after telling your boss.
:goodluck
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I agree i think it is an individual personal matter & everyone should do whats right for them
in their situation.Some people find it hard to tell others and others are very open & dont mind
telling anyone they know.I can totally understand eesha's problem,my experinces in the past
have been very negative from people.As soon as i mention the word blood people run amile
and have even assosicated it with hiv aids.I have never felt sorry for myself,but when people
in your lives such as partners or people you know & work with react bad to it,there comes a
point when you say to yourself i wont tell anyone its a personal thing,so eesha i understand
your point.For others who have not had this experience,its really hard for them to understand
how others can be so negative.