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Thread: Does it bother anyone else

  1. #51
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    Oh, I like this quote

    Quote Originally Posted by greenjeep View Post
    I figure if you are relying on others understanding of your condition to feel better, you are going to be a very lonely, disappointed person. And with this disease it's hard not to be lonely and disappointed anyway.

    What kind of sympathy and awareness is it that you guys are hoping for? I'm just wondering as Weg's can affect people in so many ways that its hard for someone who has it to know what all it can do, so what would you want the the people who don't know anyone with Weg's to know about the disease?

    My mom always sound so worried when I talk about the disease, that I kind of just want to tell the good news. I do wish they'd help with the kids more, as its been a really rough year and a half for my family.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  2. #52
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    I completely agree with everything that's been said I hwd a little laugh to myself reading your comment Pierre but your so right it happens all the time and people just don't get it but I suppose we all have to look at it that way otherwise we'd driving ourselves up the wall thank goodness for this group where we can actually talk to others who get what we're going through and you don't have to give a big speech about what's wrong with you why you don't look sick why your face is puffy etc. And then people just assume that you can no longer have a normal conversation about anything other than what's wrong with you that really bugs me. I mean come on I have other interests gosh and don't like to focus on what I can't do anymore but rather what I can yet people seem to love reminding you of your limitations which I'm quite aware of I don't need reminding like you said we're all pretty much qualified to be specialists on WG that's for sure lol

  3. #53
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    Before I was diagnosed it was pretty obviously there was something really wrong especially to the people who were around me a lot like my co workers. When I was finally diagnosed I decided to keep it to myself and my immediate family. Partly because my boss was a complete prick and would have fired me but mostly because I am a very private person and am not comfortable putting myself out there. I found this quite easy all I had to say was "it's not cancer" and people would automatically assume it wasn't serious and not ask any more questions. Personally I do prefer people not knowing I am "sick" but I too get frustrated with the assumption cancer is the only illness the is truly serious.
    Not long ago I had a girl come in to my work place and ask me to buy tickets in a raffle which provides wishes for adults with cancer. I asked her do you do this for only cancer patients or do you include all patients who have terminal illness , you can guess what the answer was. I have also known numerous people who were diagnosed with cancer who went on to be cured something we can only hope for. One day in a moment of letting my guard down I said I would prefer most cancers: I would have the same chemo and same side effects but with a possible all clear at the end.

  4. #54
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    You do realise this forum was started by an Australian. Australians do support each other you only have to ask

  5. #55
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    Quote Originally Posted by ozterry View Post
    I have a, so found very little support here in Australia. This forum has given me support just by reading others thoughts. Isolation from understanding advice has been a real problem for me.
    You do realise this forum was started by an Australian. Australians do support each other you only have to ask[

  6. #56
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    I don't appreciate being hijacked. I was referring to support in terms of information on this disease and its issues, NOT on Australians and their attitudes to people in need.

  7. #57
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    Quote Originally Posted by ozterry View Post
    I don't appreciate being hijacked. I was referring to support in terms of information on this disease and its issues, NOT on Australians and their attitudes to people in need.
    I was referring to on information and support on WG. Sorry you felt you were being hijacked, but this forum and others do provide information and support to everyone. There are also many doctors who are very up to date on the latest treatments and yes like everywhere in the world there are many you aren't.

  8. #58
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    Yeah, OK sorry, feeling not so good today.

  9. #59
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    Terry, I'm sorry that you are not feeling well today.
    It's only early. Hopefully things will look brighter as the day goes on.

    Swb21188 - are you on facebook? We would love to see you in our Australia and New Zealand WG Group.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  10. #60
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    I have a hard time, as the spouse of someone who has WG when it comes to work, I have been lucky so far with my jobs being understanding of the time I have to take off to help my wife, especially on bad days, but it is one of those things when I am starting new jobs that I ease in to telling them, I mean it is a part of my life, but one of those things that would be a major faux pas to mention at an interview, 'hey by the way my wife has a major chronic auto-immune disease that I will have to take time off of work to help care for her when she isn't feeling well, I hope that isn't a problem'


    Sent from my iPhone using Tapatalk

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