Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 10, 2012.
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Very eloquently stated. Thank you.
There is a variety of symptoms and life situations experienced in our ranks. I think probably this stigma is something perhaps every one of us has run into at some point. My thanks to Llewellyn King for sparking this.
"If we would just apply ourselves to healthy changes and stop being couch potatoes, we would discover that there wasn't anything wrong that a little gumption wouldn't fix."
Where can I buy this "gumption?" Apparently it only takes a little, so we could share it around.
I believe the Elephant in the room is stupidity itself. Eight Hundred pounds of it. The stupidity is a result of an over-worked medical system that continues to deny ME CFS exists or even worse, it marginalizes it to the realm of psychology. I have to accept that no one understands this illness or I will may go crazy. People just don't get it. They never will until the Medical Establishment stands up and says it real. I am not holding my breath......I just have a eight hundred pound elephant sitting on ME.
ME-CFS is real. It is my reality. Everyday I have to re-set my mind, that it is not us, or me, but a real illness. Onward and upward through the fog! Thanks for posting Valentijn!
Madietodd, you made me laugh! That's great! And to add to this, those "healthy changes" require an unhealthy amount of exertion on our parts. Healthy people somehow miss it completely.
I think you get it when you run so fast that your leg-braces fall off and you realize you didn't need them all along.
Hence we probably get "gump"tion by being chased by rock-throwing psychologists on bicycles. Or something
Like the prehistoric megatherium (the extinct giant sloth), these views deserve to be in a museum:
There is an innate tendency in people to accept the easy solutions. This is not an unmitigated criticism, people cannot function if they have to investigate everything. The problem is that taking things on face value can lead to prejudice.
I am a fan of Llewellyn King, he is at least engaging with the issues, something that only a handful of people in media seem to be doing.
Alex, your picture cheers me immensely. Humor and compassion help, every time.
Thank you, Jody, for writing about this key insight from L. King.
The sloths of today hang upside down from branches with what look like big grins on their faces. How we are regarded seems equally as upside down and foolish. Our reality can't seem to be accurately reflected or comprehended.
Superb article - an inspiration to me and I'll make sure other members of my family with ME/CFS get the opportunity to read it too. I was equally inspired by your article 'Adrenal fatigue; a possible element in ME/CFS'. I'd never come across any reference to this condition before and, boy, it sure rang some bells with me. I didn't pick the article up until a few weeks after it was posted, so commented on it rather belatedly. Many thanks, keep up the good workand don't pay too much heed to negative comments.
Oh Jody! YES! Thanks for writing this article, and articulating that SLOTH STIGMA so honestly and eloquently.
I was accused of being a lazy faker and malingerer by so many people during the first ten years of my illness. It breaks my heart to remember how hard I tried to just push through and accomplish all the things they expected of me, most of which I did accomplish against my body's aching need for rest, and then collapsed into crash after crash after crash, only to be accused/blamed/shamed again by the very same culprits.
It's disgusting to me now when I look back at it. At this point, I refuse to have anything to do with anyone who has that "you-have-it-too-easy-you lazy-sloth" look in their eyes. If people don't understand what a hideously life shattering illness this is, then they are not welcome in my world.
PS Why is it, though, that elephants always take the rap for people's ignorance and denial. I have read and watched a lot of documentaries about elephants, and they are so much kinder and more empathetic than most humans. So I would like to replace that word ELEPHANT with STUPID F-CK. Just saying! It's so much more appropriate.
Thanks Jody again!
This is such a real dilemma for I'm sure all of here. Not only are we very ill with a poor quality of life left but, we are made to feel embarrassed about it. What other illness has this added burden on it's patients.
Just as an aside, if I would have the capability to clone humans, I would pick Llewellyn King! Could you imagine 1,000 of him all over the country?
Thanks indeed Jodie,
well and truly said.
I have also noted a stigma against the horizontal ... which may be the same thing.
As I have orthostatic intolerance and Ehlers-Danlos Syndrome I find if i lie down when I go out I can get out a (little) bit more.
For example I recently did pre-polling for elections and took a reclining deck chair and a fit-ball to keep my feet up on. I had a blanket over my legs as it was cold.
People thought this was hysterical, in general.
Comment such as " you look comfortable' etc were made by nearly everyone.
I just laughed them off, as explaining to everyone takes too much energy.
What a great article. I loved too have you brought Llewellyn King’s posts into this too (as I think it helps all those non believers out there believe this illness is more real then they think). You are doing some great advocacy work!! Thanks
I'll share someone one of my Nutritionists stated on one of her reports (A nutrition report of all things had a huge paragraph on this). Did you know we can all be cured if we dont watch as much TV. (Needless to say I was highly offended.. I didnt even own a TV for several years while I had this illness.. I never have gone back to her).
Llewellyn King has been a lovely and refreshing surprise on a fairly bleak landscape.
I understand where the negative comments are coming from, so I'm okay with it. For myself, looking into adrenal fatigue has been fairly rewarding, so I wanted to share the information I'd found in case others might also benefit. I hope it leads somewhere helpful for you.
I don't think the elephant is the villain here. I just used it because it's really ... big. Takes up a lot of space, would cramp and restrict us if we tried to squeeze into the room with it ... or it squeezed us out. No offense meant to the elephant crowd at all.
I would love to have 1,000 of him all over the country.
That's good that you don't let the lack of awareness of others to get in the way of making things more workable for yourself.
BTW the reason I use CFS is because it's highly possible that I don't have ME but rather have the grab-bag syndrome of CFS. I understand wanting things clear cut for ME. I just need to write for both groups.
That is unreal. I can certainly understand why you didn't go back. Tough enough to be able to get out to appointments that might help. Why drag yourself off to someone who is so uninformed? Good move.
You can also try a Google Site Search
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