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Stigma of Sloth: The Elephant in Our Room

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



 

Comments

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.
Jody,

Nice article. thanks.

I'd like to add my two cents on the CFS naming issue. It's your situation, so obviously you can call your illness what you wish. My thought is that we need to get rid of the extremely harmful "CFS" name. So I would urge people to select from the following names/categories, bc it will help us all I am pretty sure: ME, atypical ME (applied like 'atypical MS' for example, is applied) and Idiopathic CF or whatever other illness one has. Not intending to offend, so I hope you don't take it that way. Thanks for your consideration.

Justin
 
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.
OMG, I'm so sorry. My family in the past has treated me very badly with regard to ME. I had to go to a soup kitchen at one point for food (while my folks are living on Park Avenue). but they never let me get homeless, Thank God! I have thought many times of what that would be like for me and how much worse it would make my ME and my life. The lack of a safety net for us, caused mostly by the Wessely school etc propaganda that we are just lazy and neurotic, is criminal!

I often wonder how many people with ME lose their insurance, become homeless, have their health spiral down and die an early death. It makes me sad.
 
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.
Good points.
 
It's interesting how we're supposed to be indolent on the one hand, while being Type A personalities on the other hand. The term "cognitive dissonance" comes to mind...
 
Jody,

Nice article. thanks.

I'd like to add my two cents on the CFS naming issue. It's your situation, so obviously you can call your illness what you wish. My thought is that we need to get rid of the extremely harmful "CFS" name. So I would urge people to select from the following names/categories, bc it will help us all I am pretty sure: ME, atypical ME (applied like 'atypical MS' for example, is applied) and Idiopathic CF or whatever other illness one has. Not intending to offend, so I hope you don't take it that way. Thanks for your consideration.

Justin
No offense taken. :) In all this time I've never been able to settle on a name that seems right to me. ME may not be what I have, from what I understand MRIs or other tests would show brain abnormalities which mine did not. And, the things I respond to in a positive way seem to fit the ol' grab bag CFS designation. I may well be one who became intensely rundown by tough life circumstances for too long, possible toxic effects from mould and chemical exposure, food sensitivities that went unrecognized for many years, etc.

I also find ME unwieldy because it's sometimes uncertain when it's used as to whether it is referring to "me" (as in "myself") or the medical condition. The full name for ME is such a tongue twister that it makes listeners' eyes glaze over as well.

I think the closest I've found to something workable would be CFIDS because it includes the immunodeficiency aspect. My feeling is, it would be good to have a completely new name ... but I don't know what it would be.
 
It's interesting how we're supposed to be indolent on the one hand, while being Type A personalities on the other hand. The term "cognitive dissonance" comes to mind...
Quite. We are overachievers and driven people who are slackers. We are afraid of and avoid exercise and we do too much and crash creating boom bust cycles. Its all in our heads yet we can find oh so many thing wrong with the right tests. If its not objectively provable its a physical disorder then it must be a mental disorder ... oh, like diabetes, rheumatoid arthritis, peptic ulcers, lupus and MS?

The psychiatric researchers who believe its all due to faulty beliefs don't seem to have a rational consistent view. They cannot even figure out what our personalities are ... and yet they are often psychiatrists. Its no wonder the media is often clueless, and the general public is out of touch. (HINT: we have the full range of personalities I think.)

I agree we need a new name. When the science is there we will get it. There are a number of tests being looked at to see if they are diagnostic. In the meantime the best we can do with ignorance is to be forgiving if we can. The public are not judging us, they are judging irrational stereotypes of us formed without adequate information. Its harder with those close to us though. They might be able to understand if they investigated more, so the question is why don't they? Why jump to snap conclusions? Not everyone does this of course, but way too many.

Bye, Alex
 
No offense taken. :) In all this time I've never been able to settle on a name that seems right to me. ME may not be what I have, from what I understand MRIs or other tests would show brain abnormalities which mine did not. And, the things I respond to in a positive way seem to fit the ol' grab bag CFS designation. I may well be one who became intensely rundown by tough life circumstances for too long, possible toxic effects from mould and chemical exposure, food sensitivities that went unrecognized for many years, etc.

I also find ME unwieldy because it's sometimes uncertain when it's used as to whether it is referring to "me" (as in "myself") or the medical condition. The full name for ME is such a tongue twister that it makes listeners' eyes glaze over as well.

I think the closest I've found to something workable would be CFIDS because it includes the immunodeficiency aspect. My feeling is, it would be good to have a completely new name ... but I don't know what it would be.
My suggestion then would be to use CFIDS; anything but CFS alone. with the same provisos that its none of my business : )
 
My suggestion then would be to use CFIDS; anything but CFS alone. with the same provisos that its none of my business : )
I will definitely think about it. Thanks for the input.:)
 
ME/CFS = Medical Death Row Says it all for me.
 
I've always been pretty lazy, and do dislike the fact that being honest about this was fine when I was healthy, but is now so frowned upon.

I was never so lazy that it caused me serious problems (well... not really serious problems!), but I was always someone who would make sure I had plenty of time for playing about and doing nothing, as well as making fun of people who filled their days with chores and activities. I'd always aim to do as little work as possible to achieve what I wanted, rather than try to do the best I could... and I was pretty good at it.

I think that a lot of people fail to realise that health problems make it a lot harder to be what I would consider to be 'lazy'. When one has the flu and has to take care of that, it's not fun lazing about all day... it's more work than being healthy at work all day. In the same way, just getting through the day, washing, and doing a tiny amount of pilates is now more work than a full days work was prior to getting ill.

I think that a biopsychosocial approach to illness means that sloth is much more stigmatised amongst the ill than it is amongst the healthy. An emphasis upon creating the belief that people have control over their health, and have a responsibility to behave in a way which optimises functionality, creates endless chores and responsibilities for those with conditions that they do not recover from.
 
I had a friend at uni who was "lazy". He was always first to complete his assignments. His assignments got good marks, and were always shorter than everyone else. His code (programming) was brief, sophisticated and worked ... but was very hard to read and debug. He was lazy. So he did everything fast and efficient at the expense of other things like clarity. "Lazy" does not always mean what people think. You could sum him up with "why do things the long way".
 
I was never so lazy that it caused me serious problems (well... not really serious problems!), but I was always someone who would make sure I had plenty of time for playing about and doing nothing, as well as making fun of people who filled their days with chores and activities. I'd always aim to do as little work as possible to achieve what I wanted, rather than try to do the best I could... and I was pretty good at it.
Was this lazy or was this about different priorities? We don't live to work unless we are working towards a passion or cause. We work to live. It seems like you had some priorities right. Is that lazy or just wisdom?
 
I don't understand how nearly 4000 posts qualifies as 'lazy' :whistle:
Posting on an internet forum definitely counts as lazing! I'm only just over 3 posts a day... could be worse.

Was this lazy or was this about different priorities? We don't live to work unless we are working towards a passion or cause. We work to live. It seems like you had some priorities right. Is that lazy or just wisdom?
Defining laziness is a tricky one. Whatever I was doing, I was happy with it! Looking back, it was a bit selfish - but I was only 20... it's okay to be self absorbed then.