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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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What do you say when...

Discussion in 'General ME/CFS Discussion' started by Never Give Up, Jun 14, 2014.

  1. Never Give Up

    Never Give Up

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    What do you say when you are out and run into people you know who ask how you are(if you're the one who is sick), or how your child is(if he's the one who is sick)? They just keep asking, and asking endless probing follow up questions.

    I don't want to discuss it, it's too horrible. When my son actually manages to leave the house he doesn't want to discuss it with people either.

    If they actually cared, wouldn't they drop a "thinking of you" note in the mail, or a meal at the door from time to time?

    We dread running into people we know and haven't figured out how to handle it yet. What do you do? What do you say?
  2. vamah

    vamah Senior Member

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    Washington , DC area
    If these are people asking "endless probing questions" when you have politely attempted to change the subject, the only thing I would say is "goodbye."
    Dreambirdie likes this.
  3. Dreambirdie

    Dreambirdie work in progress

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    N. California
    It is strange that they would ask endless probing questions. I've not had anyone do that to me in my 36 years with this disease. If they did, I would probably say something along the lines of what you said above: "We're dealing with a devastating neuro-immune disease and are not up for discussing it right now. If you would like to help out with meals and home care, then please call me at home." That ought to give them a reality check.
  4. Mij

    Mij Senior Member

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    It depends, if you don't see them often or they're just chit chat friends, then I would say "I'm ok, how are you?". You don't have to tell them about your health do you? I try to avoid it. If they are people you are closer to and know they are genuinely concerned about how you're doing, then you can say that you haven't been too well and that you have a "medical condition". If they probe further and you feel comfortable you can tell them the truth and that you are having a difficult time getting out, cooking etc.

    I've been sick for 23yrs and I try to avoid it altogether, I'm over needing people to drop notes, care etc,. but during the first 6-7yrs it was appreciated when old friends offered to help.
    justy likes this.
  5. minkeygirl

    minkeygirl Senior Member

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    Left Coast
    Tough situation. I don't think well people have any idea how hard it is. I'd just say "we're managing" or something to that effect and move in. If they continue to probe tell them what you said here. I'd rather not discuss it. If they get huffy, tough for them.

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