Stigma of Sloth: The Elephant in Our Room

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by Jody Smith



We've all known people we'd prefer to avoid. People who make us want to run the other way when we see them coming, because they do nothing but complain. It galls me no end that there are people who react this way to me if I talk about what life with ME/CFS has done to me.

Llewellyn King's White House Chronicle blog helps to alleviate a bit of this for me. He writes about us with some understanding and concern about the devastation we deal with. King seems to sympathize with the secondary affliction we are faced with as well -- the stigma of being seen by healthy people as lazy, lying or stupid.

In his January 2, 2012 blog, ME/CFS: Into 2012 without Cure or Care, King talked about similarities and differences between both the history and present-day of AIDS and of ME/CFS. He said, "There are parallels as well as dissimilarities to the early days of AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth."

Sloth. That's a word that carries some impact. Now, I've known this to be the case since the early days of my condition. Felt it around me long before I could put it into words. But for some reason it hit me hard when I read this in his recent blog. I also felt an odd sense of relief and appreciation upon hearing this person who does not have ME/CFS talk about it in this baldly blunt yet affirming manner.

This stigma has been for many of us the elephant in the room that people don't talk about. It takes up all our space and steals all our oxygen. We read the unspoken message in the averted gaze or the quick subject change, the tacky joke from some healthy person who wishes they could lay around doing nothing all day.

For others of us, the elephant is talked about far too much, as we try to explain yet again why we can't attend this, or help with that. We see the elephant plainly when we are told, for our own good, that we need to get it together, we need to grow up, we need to get on the ball.

The medical community has contributed to this surreal experience as so many in that community contend that this is a psychological condition. 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.

This commonly-held assumption that we are lazy, lying or stupid helps to create some bizarre reactions that come our way. We try to convey what it's like to have no energy, what it's like to not be able to think, how frightening it is to not be able to support or take care of ourselves.

This should have an effect similar to a fire alarm, or a shrieking siren. It should prompt a response of shock, a sense of urgency and immediacy that something needs to be done. But ... instead it's as if we hadn't spoken at all, the subject is changed and we are abandoned, told our grief is insignificant, once again.

Our words seem to go through some kind of transformation that twists their meaning. Coupled with our ragged demeanor, the lack of standing, and the constancy of our sitting and lying down, what our hearers perceive is that stigma that we are lazy, stupid or lying.

When we feel brave enough, have enough strength on some days to really spell out what torments we deal with, sometimes the response we get can only be described as embarrassment. Embarrassment for us that apparently we don't know how to act. And embarrassment for themselves as they'd really like to get away and not have to give it to us straight. If we'd just quit griping and get on with life like everybody else, everything would be fine.

Our listeners may feel that they're being forced to attend a pity party full of excuses and rationalizations. Perhaps we seem like teenagers trying to avoid our chores, making up reasons for not doing our homework. Maybe they think they should be showing us tough love to help us get over a childish desire to loaf.

We in the ME/CFS community know that this assumption of the presence of sloth and the absence of illness is a grotesque distortion of reality. Since the evolution of the internet and the ability to connect with each other online, those of us with computers and enough wits about us to use them, have finally been able to talk about it with each other.

It is comforting to me to find people like Llewellyn King who see the same reality we see. It stirs up some hope that if he can see it, maybe more people in our lives might one day come to grasp, and react to, the way things really are as well.

Further reading:

About Llewellyn King
http://www.whchronicle.com/author/llewellyn-king

ME/CFS: Into 2012 without Cure or Care
http://open.salon.com/blog/llewellyn_king/2012/01/02/mecfs_into_2012_without_cure_or_care

Llewellyn King's White House Chronicle
http://www.whchronicle.com

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Very eloquently stated. Thank you.

 

Very eloquently stated. Thank you.

Thanks Valentijn.

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.

 

Where can I buy this "gumption?" Apparently it only takes a little, so we could share it around.

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:

http://www.slothsanctuary.com/wp-content/uploads/2011/09/20090421130214-megatherium.jpg

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.

 

Like the prehistoric megatherium (the extinct giant sloth), these views deserve to be in a museum:

http://www.slothsanctuary.com/wp-content/uploads/2011/09/20090421130214-megatherium.jpg

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).

 

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.

Sing,

Llewellyn King has been a lovely and refreshing surprise on a fairly bleak landscape.

 

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.

Thanks Steve

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.

 

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.

LOL db

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.

 

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?

Nielk

I would love to have 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.

Allyson,

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.

 

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).

Wow.

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.