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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A Troubling Truth - "Dr Claudia Gillberg reflects on her own experience of living with... (M.E.)

Discussion in 'General ME/CFS News' started by Kyla, Jul 22, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.centreforwelfarereform.org/library/by-date/a-troubling-truth.html#


     
  2. daisybell

    daisybell Senior Member

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    Powerful stuff - I'm just reading through and was very struck by this paragraph, which is my experience exactly....

    "I feel weighed down by the memory of my attempts to spread education and reason regarding my new situation. Friends and relatives, with whom I have spent hours, days and months in discussion have gone from my
    life. It seems the more I tried to explain, the more alienating I became to them but I do not know what caused the rupture except that the social discourse or narrative about my illness, that dictates I am supposed to be pitied but not believed, cannot have been conducive to learning. Long since debunked psychosomatic or psychogenic explanations for physical illnesses are alive and well, in fact they appear to celebrate a revival that mirrors the emergence of possible biomarkers for my illness, which is an interesting paradox."
     
    Last edited: Jul 24, 2016
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This is great writing by Dr. Gillberg, everything articulated so well. I wish everyone I knew would read it.
     
    Johannawj, Justin30, ahmo and 6 others like this.
  4. shannah

    shannah Senior Member

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    So many parts of this writing articulate so many aspects of the ME experience so well.

    "The relentless physical pain and crushing isolation that chronic illness
    and its management bring about were, and are, cruel. The experience of
    being ill was exacerbated when I realised that few seemed concerned with

    my altered situation in life. The terror I felt at this moment of realisation

    was indescribable, that something so severely affecting my life and sense of

    being meant so little to others.


    ... Losing my grounding due to illness and disability feels
    like the earth is shifting beneath my feet continually. Feeling ill continually,
    chronically (many fail to comprehend the meaning of the term) is horrible;
    feeling ill and being excluded from society and everything that previously
    gave your life meaning and worth, is much, much worse. This is the situation
    I found myself in, and the failure of others to acknowledge, or even observe,

    my new reality caused me significant anguish."
     
    Justin30, ahmo, *GG* and 4 others like this.

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