physics
06 Jul 2006 20:39
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How do you tell them?
Do you have difficulties explaining what is haemophilia to your family members, friends, classmates, girlfriend, etc? How do you explain it to them?
As for me, I have many experiences when it comes to this topic. It can be heartbreaking, like when I was in high school. My friends used to ridicule me when I was on the crutches. It can make you popular, like when my classmates were surrounding me to hear me talking about it. It can be fun, like when I self infused in front of my roommates and see their shocking-face expression. And it can be sweet, like when my girlfriend accepted me even when it means that she might have Haemophilia-carrier baby girls with me someday.
What about you guys?
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nship
09 Jul 2006 06:37
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as I am not a PWH, actually I don`t have experience about about telling people that I was a PWH.
but, as a doctor, I have experience about telling my colleagues about hemophilia....
Sometime it`s a kind of miserable, me being a GP telling an internist (who are you? what do you know? etc kind of thing). but sometime it`s a kind of fun, me bein a GP telling a Professor (thank you for your information, etc kind of thing). sometime it`s a kind of hard, me being a GP telling people (what is a genetic disease? what is FVIII? etc kind of thing). etc, etc...
but still, I also have those kind of experiences when I`m telling about transfusion medicine. :)
so, I think, that`s life... and telling people something that`s important to you would be accepted with different kind of reactions.
^_^`
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wayne
17 Jul 2006 21:56
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When I was in senior primary school (12 years down, std2-5) my old sister did most of the explaining and she looked after me, when there was an issue. Only when I started high school did I have to start to explain to people about it (13 years and older). I didn`t really have an issue with it. I normally relate it to diabetics if people find it hard to follow.
I don’t think I was ever left out, I was normally the crazy one in my group of friends. My friends understood it and new that if I was hurt, then I just needed my medicine and then basically everything would be fine. But if we where to go out for wild night, I would normally have a transfusion first. So that everything would be cool.
There was a line that my one school friend came up with that helped keep people at bay at school… Be careful of hitting Wayne, because he might just pop… It does not paint pretty picture, but I find it rather funny and it went down very well.
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e-win
18 Jul 2006 19:09
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@ wayne
Diabetics? Why comparing PWH with them? Because of transfusion or .....
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wayne
19 Jul 2006 18:36
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Yes, and generally they need to carry there stuff with them when traveling. People are more aware of diabetes compared to haemophilia. I find that people relate and understand better.
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Riz48
21 Jul 2007 14:59
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Thankfully I`ve never had any negative responses when I tell people about the condition. Sometimes I find it really annoying having to explain the same thing over and over again! My condition, has puzzled quite a few people as I am a female and haemophlia is very rare in my gender, but I just keep the description brief and simple, without confusing anyone by going in to too much detail! Hope this helps!
Riz xx
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