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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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.

 

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.

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.

 

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.

I know, Jody. I totally get the "metaphor." 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.

 

d

I know, Jody. I totally get the "metaphor." 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.

db,

D'you like my elephant picture for the article?

 

I'm sorry to hear what you've been through. So many of us have dangled over a financial precipice....

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.

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!

 

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!

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.

 

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.

 

db, D'you like my elephant picture for the article?

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.

 

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.

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.

 

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.

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.

 

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.

 

If people don't understand what a hideously life shattering illness this is, then they are not welcome in my world.

Amen. And what a tough, tough stance that has to be sometimes, out of self-preservation.

 

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......

 

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......

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?

 

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.

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!!!

 

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

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."

 

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

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!

 

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!! Yes!

 

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.

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

 

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).

Excellent nutrition advice! What a professional.