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Stigma of Sloth: The Elephant in Our Room

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 10, 2012.

  1. GracieJ

    GracieJ Senior Member

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    Well said. This illness drove me into a corner financially at one point, leaving me homeless and with almost no resources. Was I believed? No, I was given lectures about pulling my own weight and about not taking from other people what I haven't earned. How dare I ask for help! Never mind that I'd worked my tail off for years to keep it all together. The only concern some of these people had (family members, sadly) was that I did not have health or dental insurance, a huge crime in their eyes. Funny thing happens when you can't keep up payments... no equity in insurance policies. Didn't even bother them that I had no shelter.

    How I wish I could show others what we go through, esp listening to so many on here cashing out life insurance policies, or retirement plans, or life savings, or running up credit cards... it isn't about money. It's about survival. It's just insult to injury to even suggest for the slightest moment that pwME/CFS are lazy in any way.
    MishMash likes this.
  2. Jody

    Jody Senior Member

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    Gracie,

    I'm sorry to hear what you've been through. So many of us have dangled over a financial precipice. It is shocking to see how many people just don't see the enormity of this when they look at us. I have been lucky to have always had a roof over my head. I went through a few years trying to live on a few hundred dollars a month, without a car, living on food from the local foodbank, which provided plenty of boxed and canned foods (we were grateful but the food helped make many symptoms worse) for a few weeks a month and then we mostly ... didn't eat till the next time we could go back to the foodbank.

    If my extended family were poor it would be understandable that so little help came from most of them. But they aren't. And somehow knowing what I and my husband (who has FM) and my kids were dealing with just made no impact on some of them. I will never understand that one.

    I am one of the lucky ones, recovering with the help of my naturopath, and able to work fulltime online. We have been fortunate to have a living wage for the first time in many years. But we will never forget what poverty and fear for years on end is like. May we all eventually be in positions where we can lift another vulnerable soul out of limbo. And we will all do it because we know all too well how unbearable it really is.
    Sasha and GracieJ like this.
  3. Dreambirdie

    Dreambirdie work in progress

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    I know, Jody. I totally get the "metaphor." :rolleyes: It's just that elephants are among my favorite animals, so I protest the imagery on their behalf, even though I get the point. Even on a bad brain day, I swear!

    What is squeezing us out of the "room" of the reality of this illness is all the years of b.s. that have been dumped on us by mean and very ignorant people. But I know you know that already. ;)
  4. Jody

    Jody Senior Member

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    d
    db,

    D'you like my elephant picture for the article?:)
  5. GracieJ

    GracieJ Senior Member

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    Thank you, Jody! Greatly appreciated. What keeps me going is the thought that we endure what we endure so our eyes will be wide open along with our hearts and our pocketbooks when we see someone else enduring unbelievable trials. Something good comes of it.

    "Poverty and fear" for years on end... how do you ever forget?

    I'm back at work part-time (full-time considering it is massage therapy), and pray each day, counting my blessings, tracking my continued progress to greater well-being, hoping it continues for years.

    Our "original" group of pwME/CFS is aging. Another game plan had better be in place!! or that elephant in the room is going to be more like a herd of elephants!
    MishMash likes this.
  6. Jody

    Jody Senior Member

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    I'm with you.

    This past year, I've been able to afford a semblance of normalcy for my household, always knowing that if it were to stop -- as it did before -- we have no cushion to fall back on, and the real possibility of being destitute once again is only a paycheque away. So far so good. If we can keep this direction for another year, we will be a bit more solid. And so it goes.

    What would happen if I fall off the wagon and have another crash? It doesn't bear thinking about. So I try not to. But sometimes that is another elephant in the room.
    GracieJ likes this.
  7. Shell

    Shell Senior Member

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    I am heartbroken and angry at what so many of you have had to endure. The worst that happened to us was a big pile of debt when I lost all my employment, but we've never been afraid of not having food on the table or a roof over our heads.

    I am also pretty blessed that, as far as I know, I haven't been labeled slothful. If I have, I'm blissfully unaware - or thanks to my useless memory, I don't remember if they did :) What people say behind my back is up to them.

    As for the coming herd of elephants I think we should all watch the "obligation to die" rhetoric that is building and building. If what I am seeing up close around me is anything to go by, getting old is a bad idea.
  8. Dreambirdie

    Dreambirdie work in progress

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    Hey Jody--Like I said before, I love elephants, and many other wild creatures, and am fascinated by the consciousness in them, which I feel is greatly superior in many ways to human consciousness. I started a thread about this here: http://forums.phoenixrising.me/inde...nimal-and-human-consciousness-the-same.19368/

    Daphne Shedrick, who runs an elephant orphanage in Africa, and has been caring for elephants for several decades, says that "they have all of the best attributes of us humans, and not very many of the bad." If you want to know what amazing animals elephants really are, you can watch the segment below, which ran on 60 Minutes several years ago.

    Elephants, and other wild creatures, have so much to teach us about how to live cooperatively with each other on this earth. This illness, and its human-related repercussions, has made it all too apparent for me just how much we have to learn from them.

    Jody likes this.
  9. Jody

    Jody Senior Member

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    I haven't had too many people call me that to my face though there have been a couple. Mostly, what I am aware of is the remarkable lack of response on the part of others, to some fairly dramatic symptoms I've lived with for months or years at a time. This tells me something unpleasant about what they think they are seeing -- someone who is exaggerating and a whiner who just can't suck it up and get on with it like everybody else.
    Dreambirdie likes this.
  10. Dreambirdie

    Dreambirdie work in progress

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    I have had both the overt aggressively negative remarks said directly to my face, and the more covert, passive aggressive and/or dismissive minimizing comments dumped on me. They are ALL bad. It got to a point where after my first decade with this disease, I simply expected unkindness from most people as par for the course. If they turned out to be empathetic, I would be a little shocked and pleasantly surprised. It still does not happen too often, but when it does I will receive it gladly for the gift it is.

    I know a therapist whose practice is focused on helping people with chronic and/or life threatening illness. He has told me that in his experience "real compassion is a very rare thing." I have to agree. The sad reality of chronic illness is that very few people who do not have it will ever really "get" it.
    Sing likes this.
  11. satoshikasumi

    satoshikasumi Senior Member

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    This is a legitimate dilemma society has to deal with. People are genuinely faced with very unequal circumstances, but also have a tendency to engage in opportunistic and exploitative behavior.

    In short, some people really do fake illnesses to get benefits. Some people really are lazy. But, this is no excuse for doctors making assumptions about any of us without doing adequate investigation! These people get paid a lot of money and they should act like professionals!

    However, more research to find biomarkers can only help this situation. As much as we hate watered-down research on "fatigue", a simple, objective way to measure fatigue would be a MAJOR advancement in our understanding of the human experience. (read Alan Light's poignant letter to the editor "What is this thing fatigue, anyway?" http://www.ncbi.nlm.nih.gov/pubmed/20135841
    Real progress on this is the best way society can distinguish between the ill and "cheaters".

    Scientists don't have a comprehensive theory of what causes fatigue. They also don't have an adequate understanding of the specific entity ME/CFS, which might be several specific diseases. Progress on both fronts could help society a great deal.
  12. GracieJ

    GracieJ Senior Member

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    Amen. And what a tough, tough stance that has to be sometimes, out of self-preservation.
    Dreambirdie likes this.
  13. roxie60

    roxie60 Senior Member

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    Well Said Jody! Amazing all we have to deal with physically and psychologically and to have those around us pile on their misguided observations and suggestions. Where do I get a bottle of that gumption??? knowing our medical paradigm we would be required to see a medical professional to write a script for 'gumption'.

    Really people, are their memories of us so short, do they not remember how much we use to do, how much we accomplished in life, that we rarely just 'laid around' in our former lives, that we were engaged in living. Now we are imprisoned by physical limits and small minds that surround us (I call them flat earth thinkers). Absolutely no one in their right mind would ever want to live like this......
    Sing and Little Bluestem like this.
  14. Jody

    Jody Senior Member

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    Roxie

    I know what you mean. When I was a kid, I was pretty quiet, didn't do much, preferred my own company reading. That kind of thing. But as an adult I was very busy with raising and homeschooling 5 kids and leading our homeschool group, active in our church, helping my husband run a website with 40 writers I stayed in regular contact with. When that busy person disappeared ... didn't anybody ever wonder what happened to her?
    Sing likes this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I like that domain name: slothsanctuary.com. Much more suitable for us than something like phoenixrising! : )

    I agree with your comment, again, huge thanks to Mr. King!!!
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Haha! Exactly! what an image. We should all hold it in our minds as something to which to aspire! ; )

    this reminds me of the Sarah Silverman episode where she tells the homeless Zach G. that she can't give him any food because then he would learn that food is free and that would make him somehow "homelesser."
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It could be us running up a steep mountain of graded exercise that makes our leg braces explode! Yeay us conquering our three-toed nemesis!
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    LOL!! Yes!
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I usually just tell myself "don't let the turkeys get you down". But I'm going to try "oh it's just the well established phenomenon of the SF in the room". I like it a lot better! Thanks
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Excellent nutrition advice! What a professional.

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