James Coyne: "The illusion you will be able bodied forever and the limits of empathy"

[Sasha]

Excellent post - the relevance to ME/CFS becomes apparent at the end.

https://jcoynester.wordpress.com/20...ble-bodied-forever-and-the-limits-of-empathy/

 

[eafw]

I posted a reply there but it seems to have disappeared into a black hole (again).

Anyway, I think it's actually a very poor analysis, the gist of my reply being that this lack of empathy for ill-health is not by any means a universal experience. Even as a child I would take people at their word if they described pain or feeling unwell, and it was obviously not a nice thing to be ill or disabled and it could happen to anyone.

There is also the aspect of whether an illness or a person is considered to be legitimate or credible and that, for many people, will very much influence whether empathy or a constructive response is forthcoming. (Which is why we see the tactics we do coming from the BPS crowd, to try and paint us as deranged in some way, it works.)

 

[Invisible Woman]

I can see where James is coming from but .... the stigma of having ME means that people tend to have made up their minds about you and the type of person you are before they even lay eyes on you. Especially medics.

Having said that I don't think it is a disrespectful piece nor meant to be. It will promote some discussion that will be interesting. Perhaps that was the point.

I will say that, while I may have gone toe to toe with an aggressive and judgmental doc in the past, I have never reacted angrily with a lay person who just doesn't get it. I also think calmness and politeness works best but I have been on the receiving end of verbal aggression on a number of occasions by people who were fine when they knew I was unwell, but became nasty when they discovered exactly what was wrong with me.

 

[Bob]

@eafw, he moderates all comments so it might get posted later.

 

[Sasha]

Anyway, I think it's actually a very poor analysis, the gist of my reply being that this lack of empathy for ill-health is not by any means a universal experience.

I don't think he's saying that it's universal, and I think he's pretty accurate concerning the people to whom it applies. Just MO, though.

 

[JohnCB]

Perhaps we need to pull back a bit and take a broader perspective. He wasn't just writing about us. He was talking about his experience, it is up to us to decide how important that is to each of us individually. I found he gave me plenty to think about, as did the comments. It seems to me that the commenters also found it gave them something to think about. People are voicing thoughts that perhaps they might not always feel comfortable to state. Altogether a worthwhile piece I think.

 

[Old Bones]

Excellent post - the relevance to ME/CFS becomes apparent at the end.
https://jcoynester.wordpress.com/20...ble-bodied-forever-and-the-limits-of-empathy/

@Sasha Like you, I think James did an excellent job of clarifying the intent of his earlier tweet. And, the fact that he took the time to do so increases my respect for him.

There is also the aspect of whether an illness or a person is considered to be legitimate or credible and that, for many people, will very much influence whether empathy or a constructive response is forthcoming.

@eafw Absolutely. I've received much more empathy with respect to my much more-recent Rheumatoid Arthritis diagnosis than I ever have for ME -- this despite the fact that if I had to choose one of these two illnesses, it would be RA. This is not said to discount the experience of RA patients. I have no doubt that many of them suffer horribly. They must, considering ME is often described as having a comparable illness burden to RA. But for me, with the exception of approximately a year when I was being diagnosed and my treatment was being determined, RA, at least so far, has pretty much been a "background" issue, whereas ME adversely affects every aspect of my life.

 

[eafw]

I don't think he's saying that it's universal, and I think he's pretty accurate concerning the people to whom it applies. Just MO, though.

No, he hasn't explicitly said "this applies to everyone" but he is putting it (lack of empathy for those who are ill until you've been struck down yourself) forward as an explanation of why people can't/won't sympathise with us.

I still think he is missing something more fundamental from his analysis. Which is that if you have a group of people who have already been made out to be undeserving or unworthy, then it doesn't matter how capable of empathy people are (in other circumstances or for other more deserving causes) then empathy/sympathy will not be forthcoming for us.

That is, people don't hold negative views about [undeserving demographic] eg "single mothers"/ "cfs patients"/"benefits scroungers" simply because they've never been one themselves. It is because [undeserving demographic] have been scapegoated and stigmatised and rendered of less value when it comes to dishing out acknowledgement or support or recognition. That is what we are up against.

 

[TiredSam]

He wasn't just writing about us.

He was writing directly to us, to explain a tweet that started with "#MECFS pts ..."

I see it as an interesting and worthy psych opinion piece. He seems to be widening the range of things he's prepared to comment on regarding ME, after initially restricting himself to the bad science of PACE.

I particularly liked the following:

And now he had acquired the wisdom to admit that sometimes experienced his disdain for “weak, sick people” because he was frightened by any suggestion he could ever become that.

and

I really believe that patients are entitled to any emotion they find useful in coping with difficult and often intractable health problems. I certainly don’t buy into the idea that positive attitudes can somehow mysteriously directly influence physical health outcomes.

Other authors have written on the above topics. I find Coyne's analysis doesn't entirely reflect my experience (before and after getting ME) and seems a little pessimistic, I've been noticing lately that I seem to have rather a lot of people around me who "get it" and have been very accepting, accommodating and are more empathetic than Coyne's article seems to give most people credit for.

Not sure I need the reminder to empathise with those around me suffering from the illusion that they will be able-bodied for ever like I used to either, but maybe that's because I don't feel that detached from them yet.

EDIT: There are some brilliant comments in the comments section, very well worth reading all of them.

 

[roller]

fatique is a symptom of life. for everyone.
all ppl have to fight with this, daily. as its something chronic.
its normal that there is no much empathy for chronic fatique

i cant get along with 'chronic fatigue'.
before i would ever say this, i may cut my tongue out.
i also dont want anyones empathy, but a diagnose.

this overly stupid term was coined by a doctor, wasnt it?
the inability to diagnose or help is also to blame on the medical profession.
time to rename them and show no empathy anymore.

 

[Bob]

I didn't find this blog useful for me personally, but I've just been reading the comments and I think they are really excellent, wise, intelligent and insightful. Top quality comments.

 

[Esther12]

I wasn't so interested in this blog, but think it might relate to some twitter controversies I'm oblivious to.

imo: good he ended it with something like 'who am I to tell you this', as in some ways it did seem like it was explaining things that I think most CFS patients would have had to come to understand as part of being ill. Maybe it was useful having this perspective explained from someone who is not ill themselves?

 

[Forbin]

People may be skeptical of ME/cfs because they cannot conceive of being so ill themselves, but a far greater problem is that they cannot conceive of government, science and medicine being so incapable of (or so uninterested in) finding the underlying mechanism. That's where a lot of the uninformed skepticism comes from.

Critically, they also have no idea how little money has been spent on it.

It's like the government saying, "We can confidently state that putting a man on the moon is impossible. We've been spending $5 million a year on this - most of it on telephone surveys in Wichita - and we're still no closer."

 

[Mrs Sowester]

Excellent post but I think he's missed an element or two from his piece about the lack of empathy from the able bodied; one being the 'undeserving demographic' that @eafw refers to and another being how this links to the magical thinking & power of mind theories that are so popular at the moment.
Illnesses, especially those that affect the mind or brain, are still seen as weakness of character by many. Therefore those who are healthy falsely believe their positive outlook, self discipline and strength of character will magically prevent them from succumbing to illnesses like ours. My father asked me "Can't you fight it?" when I had been unwell for 2 years. He really believed if I ate the right food, took the right supplements and wasn't defeatist the whole ME thing would go away.
There's also the 'just world theory' to be taken into account; the belief that if you're a good person then bad things won't happen. When many people get a nasty diagnosis they think 'why me? What have I done to deserve this?' when in reality they should be thinking 'Why not me?' random shit just happens.
James is right, when we're young we believe we're indestructible, bad things happen to other people, we'll never get old, we'll never be the person in the wheel chair (unless we break a leg but that'll only be a temporary inconvenience). We also believe that doctors will make us better...
I didn't know anyone with ME before I got diagnosed - when a neurologist first suggested I might have PVFS I said "Is that a real disease????" If I'm completely honest I must admit, to my absolute shame, I thought ME was something neurotic, flaky, attention seekers said they had. Of course now I see it very differently - they/we aren't hypochondriacs we really have something very wrong with us.

 

[Mrs Sowester]

P.S. someone needs to tell James to step away from twitter - it seems the guaranteed medium for getting ones message misunderstood and falling out with everyone!

 

[sarah darwins]

P.S. someone needs to tell James to step away from twitter - it seems the guaranteed medium for getting ones message misunderstood and falling out with everyone!

That was my first reaction, too. But it's a double-edged sword, isn't it. He's done some great work bringing attention to the key issues on Twitter.

But it does seem that no one can have an impact on Twitter without eventually getting themselves into a right old mess with it.

 

[Mrs Sowester]

That was my first reaction, too. But it's a double-edged sword, isn't it. He's done some great work bringing attention to the key issues on Twitter.

But it does seem that no one can have an impact on Twitter without eventually getting themselves into a right old mess with it.

Yep, I really feel for him to be honest - he's trying to do the right thing for our community but twitter is not a good medium for debate. He must be drowning in a sea of messages on twitter and facebook. He needs to take a leaf out of Stephen Fry's book and deactivate his account for a while.

 

[msf]

So we should empathise with others´ lack of empathy for us? I hate to blow my own trumpet (I would much rather someone else did) but my take on empathy for ME patients made a lot more sense than this.

 

[Mrs Sowester]

So we should empathise with others´ lack of empathy for us? I hate to blow my own trumpet (I would much rather someone else did) but my take on empathy for ME patients made a lot more sense than this.

It's about understanding all sides of the problem, empathy for and from either side leads to understanding and accord.

 

[msf]

Ok, my take on it made more sense/helped me more to accept the situation more than Coyne´s take.