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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Stigma Poll

Discussion in 'XMRV Testing, Treatment and Transmission' started by taniaaust1, Jun 25, 2010.

?

the situation to this poll is in thread below (not enough space)

  1. Happily say yes

    3 vote(s)
    21.4%
  2. Uncomfortably say yes

    2 vote(s)
    14.3%
  3. Say no making up excuse

    1 vote(s)
    7.1%
  4. say no and say why

    6 vote(s)
    42.9%
  5. I dont know what I'd do

    2 vote(s)
    14.3%
  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
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    4,821
    Sth Australia
    deleted.. didnt work.. tried to do poll

    ...?? i cant delete this one post.. this post is confusing everyone as it's been moved into the poll part which did work.. can this one post please be moved by a mod and deleted entirely. thanks.
    ............

    To anyone who sees this post which isnt meant to be here.. the actual poll question has ended up on bottom of the thread.
  2. Daffodil

    Daffodil Senior Member

    Messages:
    2,801
    Likes:
    775
    of course no one would.

    yrs of isolation because of this disease, now more isolation because of fear of infection.

    can we ever win?
  3. coxy

    coxy Senior Member

    Messages:
    174
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    1
    scary stuff!!
    This is my biggest worry at the moment. We have 4 children, 2 of which have me/cfs, although my daughter is now 16yrs (ill for last 8yrs), my son is 12yrs (ill for 4yrs). So i'm scared for them if the xmrv pans out. We also have a healthy 14yr old and a 6yr old who isn't ill but certainly gives me cause to worry with certain symptoms which seem to come and go.

    All of our healthy 2 childrens friends and teachers know their brother and sister are ill with me/cfs, so i do worry how they will be treated if people start to think they may be carrying xmrv. I worry about the questions that may come our way and how to handle answering them.

    I'm also very worried as to how to handle telling all the children about xmrv. I have kept it pretty much to myself so far until i know the facts for sure. The other evening my ill daughter wanted to try our healthy 6 yr olds ice lolly he was eating and i found myself stopping it happening, worrying she could pass something on to him. All these things are going to have to be addressed quickly if this news breaks, are we prepared? Could we ever be prepared?
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,821
    Sth Australia
    The poll question is.

    Imagine you have a young child. Your neighbour has a young child who has a serious, disabiliing, infectious disease which is transmitted by blood and maybe also saliva. The disease isnt treatable (or financially treatment would be out of your reach). Your neighbour asks if your child can come over and play.

    Would you....
  5. Dainty

    Dainty Senior Member

    Messages:
    1,355
    Likes:
    526
    Washington State
    I imagine I would have a long talk with my neighbor, asking questions about the illness and any known facts about its transmission, and if the child freely plays with other kids, if the child has been trained to follow some basic hygiene rules, etc. Age would make a difference, the older the better....a 3 year old spreads around a lot more saliva than, say a 10 year old.

    After getting information from the neighbor, I'd talk with my own child to explain why there is a need for greater hygiene precautions when playing with this neighbor, and I wouldn't allow my child to do so until I trusted that s/he would follow through.

    If my concern level was heightened and/or my own child had a compromised immune system or was fighting a bug at the time, I might make face masks (used and worn properly) a condition of the play date. I'd have both kids wear them, so that neither one feels singled out and it'd also decrease potential opportunities of infection.

    I would make sure to be completely honest with the neighbor about any concerns I had, but I would do everything I could to keep the relationship open both between parents and between kids. It's a great educational opportunity for them, and gives those neighbors a friendly place to turn to when everyone else is skrinking back and not lookign them in the eye.

    If it reached the point where I was just too concerned, I would say no to a conventional play date, but would still encourage interaction, such as the kids talking with each other through the phone or accross the yard, etc. I very much doubt that I'd become that concerned, but if I did I would still try to make things work while doing what I felt I had to do to protect my kid(s)

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