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ME/CFS: A disease at war with itself

Discussion in 'Phoenix Rising Articles' started by persuasion, Sep 10, 2014.

  1. persuasion

    persuasion visitingmrssmith.com

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    Jody submitted a new blog post:

    ME/CFS: A disease at war with itself

    Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS ...

    We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.

    [​IMG]

    It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?

    All illnesses are stigmatised: when you get ill people prefer to stay away. As Chaucer put it hundreds of years ago, 'To seek … the company of loathsome lepers … there was no decency or profit in it.'

    Society likes to keep its 'other' firmly at bay. It is threatened by disease, even if it is not physically threatened, because the ill bring chaos to our culture's accepted ideas of what is normal and therefore valuable.

    Severity is an issue here. Even if you tell people you have MS, so long as you are still quite well with it, as many people are, then you are going to appear less threatening and will be 'allowed' to continue as a well person, despite your label. But your label still marks you out as different.

    This does apply to our disease also. You are more likely to be viewed sympathetically, if you are mildly affected and can continue, even in a stunted way, the normal activities of life: relationship, kids, work, social life.

    But ME/CFS carries a double stigma: stigma-max. We are the 'other', but we are something else too.

    We are viewed as claiming something we shouldn't, i.e., the space which 'real' or 'genuine' sick people occupy. This is ironic since the 'special space' is nowhere any ill person wishes to reside.

    For us to claim this is deemed highly suspicious and, frankly, despicable.

    We are seen as untrustworthy by insisting that our disease is physical rather than psychiatric (even though the latter is also often 'physical' since it affects the brain) so as to award ourselves credit and status. Again ironic, since credit and status is hardly endowed to the so-regarded 'real' diseases except in the form of dubious accolades such as the 'brave fighter' or 'tragic victim,' etc.

    Interestingly, even quite severe depression (I exclude schizophrenia and other psychotic disorders which are heavily stigmatised) is often more sympathetically viewed than ME/CFS because at least sufferers 'accept' their diagnosis.

    We, on the other hand, are not accepting the position accorded to us. We are misbehaving. This goes somewhere towards explaining the often rancorous and punitive attitude towards ME/CFS from the larger community, be it medical, familial or social.

    What effect does this have on the sufferer? A hugely debilitating one.

    It means that we have no identity, nowhere to put ourselves comfortably within this illness. We are left scrabbling around to cobble together some kind of identity in an ad-hoc way without even a reliable name for the disease that tortures us. We doubt our own symptoms, we doubt others' symptoms.

    This insecurity and lack of integration with the illness, penetrates the ME/CFS community. There is no doubt that we provide each other support and friendship but we also argue amongst ourselves, sometimes bitterly.

    Who has ME? Who has CFS? Which is the 'real' disease? Which is worse? Can you have ME/CFS and still work? How can you be mildly affected if the primary symptom of the disease is 'severe' exhaustion?

    My friend with ME uses a wheelchair but I'm more ill and I don't. Another friend only suffers pain, I suffer from fatigue ... and the comparisons and self-annihilating disbelief and acrimonious competitiveness continue.

    I wonder if other diseases have these battles within their community?Do the severe MS sufferers hate the mild ones since it is on the back of their paralysed bodies that the fearsome reputation of the disease is based, while all the more 'well' sufferers get on with their lives? If they do, I suspect they are still not quite as at war with each other as we are.

    It is not news that a group that is oppressed and discriminated against falls upon itself. That's how factions in revolutionary groups develop. The revolutionaries arise from an oppressed and discriminated segment of society, but then start bickering and infighting.

    Would one definitive name for this disease stop us tearing ourselves apart? Would it inhibit those outside from undermining us? Not unless the science supports it. Unfortunately, our Frankenstein name still encompasses disparate groups suffering from that vague and meaningless term 'fatigue' chucked into the stew of ME/CFS. Everyone knows the stew stinks, but that is a subject for another time.

    For further reading:

    See the author's blog: http://visitingmrssmith.com




    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]


    Continue reading the Original Blog Post
     
  2. worldbackwards

    worldbackwards A unique snowflake

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    Cracking article. Nails the whole guilt and suspicion thing. The irony of the 'avoiding psychiatric stigma' argument is, of course, that we're already stigmatised in an equally destructive way - it's hardly a soft option.
     
    ahmo and PennyIA like this.
  3. Simon

    Simon

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    Thanks for a really thoughtful piece.
     
  4. Sean

    Sean Senior Member

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    Many good points.
     
  5. Dreambirdie

    Dreambirdie work in progress

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    "Severity is an issue here. Even if you tell people you have MS, so long as you are still quite well with it, as many people are, then you are going to appear less threatening and will be 'allowed' to continue as a well person, despite your label. But your label still marks you out as different.

    This does apply to our disease also. You are more likely to be viewed sympathetically, if you are mildly affected and can continue, even in a stunted way, the normal activities of life: relationship, kids, work, social life.

    But ME/CFS carries a double stigma: stigma-max. We are the 'other', but we are something else too.

    We are viewed as claiming something we shouldn't, i.e., the space which 'real' or 'genuine' sick people occupy. This is ironic since the 'special space' is nowhere any ill person wishes to reside.

    For us to claim this is deemed highly suspicious and, frankly, despicable."

    This is so good Jody! Spot on.

    And the part about "MISBEHAVING." OMG, did I hear a lot of those accusations during the early years of my illness.

    "Snap out of it!" "Just be normal!" "Stop being such an invalid!" and one of my all time bizarro favorites "Just change your mind!"

    It's laughable now, but it sure did a number on my head when I was first sick. Sad how mean and clueless humans can sometimes be.
     
    Valentijn likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    Very well-written. Thank you @Jody for sharing it.
     
  7. Desdinova

    Desdinova Senior Member

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    Yes "spot on" indeed. I've heard (and seen) a coworker with MS experience an go through it. As a male with FM I have and still do experience this. Having been literally flamed and out right attached on various discussion forums / sites. Often for no more than being a male who insisted I had an FM diagnosis.
     
    ahmo and Alea Ishikawa like this.
  8. xchocoholic

    xchocoholic Senior Member

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    Interesting article @Jody. Thanks.

    This makes me wonder if I've been naive about all of us here just wishing the best for other members. None of us chose to get this wastebasket dx. And none of us appreciate the fact that it's up to each one of us individually to get ourselves out. Even if we just wind up in a different bucket.

    Not knowing who we can trust complicates this. At this point we're easy prey.

    Fwiw, I don't think my illness was ever doubted by the medical profession because I had too many physical findings. I just ran into those who weren't interested in being part of my medical team. I'm not sure how common this is for pwcs.

    Tc .. x
     
  9. Jody

    Jody Senior Member

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    To those thanking me for a great article -- you're welcome. But I didn't write it.:) My name shows up at the top because I uploaded it and that's how our system does things.

    It was written by someone else, Persuasion Smith. She will be happy to see the warm reception to her article.

    Carry on.:)
     
  10. xchocoholic

    xchocoholic Senior Member

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    Lol. Pwcs !!! What can we say ? I see it now.

    Fwiw if it makes you feel better, imho, this just shows how we've grown to expect well written, thought provoking articles from you.
    No pressure ... tc ... x
     
    ahmo likes this.
  11. Jody

    Jody Senior Member

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    Ha! xchoc ... yer funny. :)
     
    xchocoholic likes this.
  12. jimells

    jimells Senior Member

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    In a society organized around war and wealth, there is no room for Useless Eaters.
     
    Kenshin, Ren and Sidereal like this.
  13. persuasion

    persuasion visitingmrssmith.com

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    Thanks worldbackwards.
    Guilt and suspicion. It's a very strange experience having this illness!
     
    worldbackwards likes this.
  14. persuasion

    persuasion visitingmrssmith.com

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    Thanks Simon.
     
  15. persuasion

    persuasion visitingmrssmith.com

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    Yes, 'Useless Eaters': a frightening concept.
     
    jimells likes this.
  16. persuasion

    persuasion visitingmrssmith.com

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    Thanks Dreambirdie,
    I'm glad you liked the 'misbehaving' idea. It took me a while to realise that this is how people often viewed me, as if I was doing something really anti-social just by being ill with this disease.
     
    Cheshire and Dreambirdie like this.
  17. persuasion

    persuasion visitingmrssmith.com

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    Thanks Gingergrrl. Love the Daxie (we had a black and tan mini till recently.) RIP Ruby.
     
    Gingergrrl likes this.
  18. persuasion

    persuasion visitingmrssmith.com

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    Thanks Desdinova,
    Very interested to hear that people with other conditions do experience a similar social disapproval or even outrage.
     
  19. persuasion

    persuasion visitingmrssmith.com

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    Thanks xchocoholic,

    I agree, the trust issue is hard. I think most people with ME do support each other. I think it's more a case that when one is oppressed, sometimes that oppression causes rifts within a community, particularly if that community is already not cohesive due to perhaps different conditions inhabiting the same supposed disease.
     
    xchocoholic likes this.
  20. persuasion

    persuasion visitingmrssmith.com

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    Thank Jody!
     

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