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NY Times: Opinion, "In My Chronic Illness, I Found a Deeper Meaning"

Discussion in 'General ME/CFS News' started by Andy, Jan 11, 2018.

  1. Andy

    Andy Senior Member (Voting Rights)

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    In my opinion the article is better than the title suggests.
    https://www.nytimes.com/2018/01/10/opinion/in-my-chronic-illness-i-found-a-deeper-meaning.html
     
  2. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    I found that article quite beautiful, I'm going to drop a link in the peace and acceptance thread.
     
  3. TiredSam

    TiredSam Moderator Staff Member

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    Yes I wasn't expecting it to be that good given the title. Also wasn't expecting to learn that ME makes me more of an outsider than a transgender rabbi.
     
  4. Trish

    Trish Moderator Staff Member

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    I agree it's a very good article, highlighting the problems with diagnosis, prejudice and living with serious chronic conditions.
     
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  5. Andy

    Andy Senior Member (Voting Rights)

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    I'm not sure that there is any established metric to measure that so I shouldn't necessarily take that as established fact.
     
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  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    The similarity between playground bullying and how ME/CFS patients are treated has always struck me. The bully (in our case BPSers) strikes to suit their own ends and others follow because they don't want to become the next target.

    People look at us and, I think, some small part of them is afraid. Afraid that they could one day be on the outside, like we are. The readiness to believe the narrative that has been spun is because they don't want to be like us. Surely if they are strong people with a good work ethic and backbone it won't, can't, happen to them. Therefore we must be weak, workshy, misguided.

    We embody their fears.
     
    Last edited: Jan 11, 2018
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I liked the picture at the top - it illustrates how poorly we understand what a self is. And maybe is not too far off the truth.

    I was also impressed by the text. Any doctor who thinks they know what is going on here is a charlatan. My colleagues need to be humble enough to admit they have no idea.

    It reminds me of ringing up British Telecom to complain that my Broadband did not work. They checked it out with their checking out system. 'It's all fine sir, working perfectly'. Er, no it isn't, there is no signal. 'Well I don't know why that is sir it is all fine, I just checked it out. There is nothing wrong with your line and after the point where the line enters your house it is no longer our responsibility.' But after it enters my house it attaches to one of your Broadband hubs, so that is your responsibility isn't it?. 'Oh, that is not my department, sir, we cannot actually test the hub, all we can say is that the line is fine.' And so on until I changed providers.

    'Oh it must be lupus - not my department.' 'Oh no, it's not lupus it must be hysteria, not my department.' I can hear their voices ringing in my head.
     
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  8. TiredSam

    TiredSam Moderator Staff Member

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    Unfortunately we only seem to have a sample size of one at the moment:

    So I agree that with such a small sample size it's hard to say anything conclusive. We need more data. Perhaps the MEA should have a poll - "are you a transgender rabbi?" they can get 15,000 responses to their polls so a few more are bound to show up. It's a pity Charles Shepherd is taking a break from social media at the moment, by the time he returns we'll probably be focusing on something else. Must remember to mention it to him.
     
    Last edited: Jan 11, 2018

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