Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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I wish people would understand

Discussion in 'General ME/CFS Discussion' started by digital dog, Oct 16, 2015.

  1. digital dog

    digital dog Senior Member

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    I am so sick and sad when people tell me that health is all in the mind and that my body will respond with a positive attitude. That if you don't THINK of being ill, you won't be ill.

    A few of my friends have conditions (Lupus, bad back etc) and their attitude is that if you don't talk about it, then you forget about it.

    They are basically calling me weak but I know that ANYONE feeling like I would could not think themselves out of this. God knows I have tried.

    Yes positive thinking is very important but even when I am in a bad way I am using ALL my will to stay positive.

    I am NOT weak, I'm stronger than anyone I know. No one can go through this crap for two decades and be called weak if they are still putting one foot infant of the other.

    Rant over.

    DD
     
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  2. JaimeS

    JaimeS Senior Member

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    I'm sorry you're experiencing this, DD.

    I just read a huge article about denial of pain - how it's not 'cool' to admit you're in pain or discuss your pain, physical or emotional. How it's meant to be eye-rolled and 'dealt with', preferably privately, so it disturbs no one.

    People don't want to have to think about your pain. If they can suppress theirs, its your 'duty' to suppress yours. When you don't, you're breaking a social contract that they feel they must live by, and therefore you're breaking the rules.

    First of all, you don't have to agree to that social contract, full stop. It's your pain or debility, not theirs, and you can do as you like with it, which includes discussing it / displaying it or keeping it to yourself - if that's even an option. That brings me to my second point: when you're sick enough, hiding it isn't always even on the table. If I'm about to keel over, I feel I have to announce that, because otherwise I rudely walk off mid-conversation with no explanation. Sometimes it's not possible to grin-and-bear-it: sometimes it's the choice of passing out or sitting down. If people don't have enough empathy to imagine themselves in such a situation, I don't know what to make of them.

    They clearly don't understand that some people can have experiences different from their own, and there is both more than one kind of sick and many different levels of debility.

    Your rant is accepted and here is mine in return. ;)

    -J
     
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  3. PatJ

    PatJ far and free I gaze

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    That kind of social contract is immature, self-centered and greatly lacks compassion. Society is stronger when we care about and respond to the pain of the people around us. Shared pain lightens burdens and increases sensitivity and understanding. Phoenix Rising is a good example of how that effect works. If we ignore others pain then it's easier to hurt them even more through callous acts.
     
  4. Effi

    Effi Senior Member

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    @digital dog I think about these things regularly too... 'If only they knew', right? If you can forget about your illness sometimes, it's probably a) because it isn't that bad ALL the time; or b) because you're getting treatment so it isn't that bad ALL the time. Or a) + b). We have neither a) nor b) so as you say:
    100% true! :)
     
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  5. JaimeS

    JaimeS Senior Member

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    The article in question also called that complete nonsense.
     
  6. PatJ

    PatJ far and free I gaze

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    Did the article give any valid reasoning for calling it nonsense? Is the article available on the web?
     
  7. JaimeS

    JaimeS Senior Member

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    @PatJ - I'm agreeing with you, not disagreeing with you. The author posits that the social contract around pain and the expression of it is nonsense. In my previous response, I was also indicating that it's up to the individual which social contracts they 'sign' and participate in and which they deem not worthy.

    Here is the article, though be warned. It's over 10,000 words long and written well but circuitously: The Grand Unified Theory of Female Pain

    -J
     
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  8. PatJ

    PatJ far and free I gaze

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    I realized that we agreed. I think my phrasing might have unintentionally implied otherwise.

    It was an interesting article, and so were many of the comments. Maybe I'm brainfogged or overwhelmed by the length of the article (probably both) but I didn't come to the same conclusions that you expressed about it. I thought the author was exploring internal and external ideas of female pain, but eventually decided that:
     
  9. Vic

    Vic

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    Word. Although, I've realized that as long as you can couch it in terms of a struggle, people are a lot more empathetic and even interested in your pain, past, and what you're trying to do now.
     

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