James Coyne explains: "The limits of empathy"

[Merry]

After trying unsuccessfully to convey in a tweet, one directed at ME/CFS patients, an idea about empathy, James C. Coyne writes at length in a blog post titled"The illusion you will be able-bodied forever and the limits of empathy." I gather that this comes in response to the anger that erupted in the ME/CFS community this week.

There is probably some point in your life where you were quite healthy and never anticipated being struck down by the illness. You had the illusion of being fully able-bodied forever. You probably lacked empathy with people who complained of impairment from illnesses you couldn’t see. You may even have thought that their reports were illegitimate and self-serving. They were faking it to get sympathy or to get out of doing things, maybe. Beyond that, you might’ve been threatened by the confrontation sick and disabled people provided you with the possibility that you could ever be in their shape. Maybe you could’ve mustered up some dislike and intolerance
You lacked the empathy that goes with the illusion of being fully able-bodied forever. Now that is different.

But you are in constant contact with seemingly able-bodied people who couldn’t possibly understand what it’s like to have your life destroyed by an invisible, poorly understood illness, that some deny even exists and other say is only in your attitude. They may try to be sympathetic, claim they understand, but they really can’t. If you are going to get along with them, you may need to understand they can’t understand. . . .

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

 

[Strike me lucky]

Walking in someone else's shoes is probably Relevant .

Working in the medical field, most roll their eyes at invisible illnesses and empathy is only shown when there's a broken bone poking out of the skin. But I do think many in the medical field are busy and bombarded by pain and suffering and become desensitised to it, until they have a personal encounter with an illness.

 

[San Diego]

Here’s the problem I see with chronic illnesses and the general public’s perception. Name any chronic illness. Let’s take ME/FMS for example. Now list a few of the symptoms and a “normal” person’s perception of said symptoms:

Headaches - “I have headaches a lot. I just deal with them."
Dizziness - “I have that when I stand up too fast. No biggie."
Nausea - “Who hasn’t had nausea? Take a Tums."
Fatigue - “Hahahaha"
Confusion - “I tried to open my garage door with my key fob last week. Who doesn’t get confused?"
Brain fog - “Sometimes before I have my morning coffee I’m in a fog, too."
Widespread pain - “I get sore every day after my workout. What’s the big deal?"

Get it? This is why we are so easily dismissed by people who don’t personally know us. Everyone thinks they’ve had every symptom listed for every chronic illness. The pat themselves on the back for how well they are dealing those symptoms, which to them are minor annoyances, so why can’t we?

The people close to us, who knew us before and have seen our downfall and suffering, have empathy without walking in our shoes because they believe us. I expect nothing less from those claiming to help us - whether that be doctors, researchers, technicians, home care aides, or anyone else who enters our space.

Some very troubling perrsonality disorders are defined by a complete lack of empathy. Makes you wonder, doesn’t it?

 

[IrisRV]

You probably lacked empathy with people who complained of impairment from illnesses you couldn’t see. You may even have thought that their reports were illegitimate and self-serving. They were faking it to get sympathy or to get out of doing things, maybe. Beyond that, you might’ve been threatened by the confrontation sick and disabled people provided you with the possibility that you could ever be in their shape. Maybe you could’ve mustered up some dislike and intolerance

Coyne is not speaking for me here. True, I didn't understand what people with chronic illnesses are faced with in the same way they do. I never thought they were not telling the truth, or that their complaints were self-serving. I just didn't fully understand the depth to which chronic illness reaches into every single little corner of your life.

He is also not speaking for some of the amazing doctors who don't have this illness or a loved one with it but still believe us, treat us, and try to do their very best to make our lives better. Drs Klimas, Rey, Vera, Peterson, Kogelnik, Kaufman, and others, thank you for not lacking empathy for us when doing so would have made your life paths so much easier.

That said, I think Coyne is spot on for a lot of people. We have to accept that that's where most of them are coming from, and try to deal with them where they are. Most are not going to voluntarily give up their Just World illusions without a fight. It upsets their personal sense of security. They're not going to throw that away unless they have no choice -- when they or someone they love becomes chronically ill.

Like it or not, fair or not, it's up to us to make them understand, or at least develop some degree of empathy. Life can be f*cking unfair sometimes.

I thank Dr Coyne for realizing that brief tweet remarks can often be confusing and even misleading, and taking the time to write a blog to expand on the idea to help us understand what he was trying to say.

 

[Empty]

RIP 'George'. Coyne conveys very well his struggles and depth of suffering. Good that a bit of psychology helped him and his relationship with his wife too.

Nothing like M.E. situation though. Not comparable.

The Doctors are suffering from Diagnostic Belief Syndrome. Patients are suffering because of it. Look at this example of Esther Hope 23. Diagnosed with 'constipation'.

I particularly like the explanation of the hospital doctor who told her she had wet herself as it was her body preparing to go to the loo.

Then oops!

http://www.huffingtonpost.co.uk/2016/02/25/mum-didnt-know-pregnancy_n_9314244.html


Perhaps I could understand the blog if I understood the spat. Why did coyne block Angela K @Merry.

 

[Merry]

Perhaps I could understand the blog if I understood the spat. Why did coyne block Angela K @Merry.

Hello, @Empty. I often have trouble interpreting what is going on in Twitter conversations, but I think that the reason James Coyne blocked Angela Kennedy was because of something she said in a private message. Then in a tweet he explained that he would block anyone who attacked other ME/CFS patients. People tweeted nasty things about Cort after James Coyne recommended Cort's article on Brian Walitt, and I read somewhere that people were going after Julie Rehmeyer (although I don't know if that happened on Twitter). In the meantime Jen Brea, when challenged on Twitter by a person who doesn't like that Jen has been paying herself a salary out of the money donated to her to make a film, threatened to quit -- not finish the film? Oh, also, I saw on Phoenix Rising that people were attacking Brian V. (?), former NIH employee, for trying to calm PR members furious over the appointment of particular scientists to the upcoming NIH research project.

 

[Merry]

What explains the lack of empathy ME/CFS patients show for each other?

I agree with @San Diego that some people seem constitutionally incapable of feeling empathy. If that is true, then I would guess that the ability to feel empathy varies greatly from person to person. Can empathy be taught? I don't know. I guess people can be reminded to think about other people's feelings and to try to understand other points of view.

But this is not the subject James Coyne wrote about in the blog post. I'll shut up.

 

[Cort]

Like it or not, fair or not, it's up to us to make them understand, or at least develop some degree of empathy. Life can be f*cking unfair sometimes.

Agreed. It doesn't seem "fair" to have an illness and then have to be bigger than those who are healthy (at least in body ) acting small or dismissing you in the midst of your illness!That's kind of backwards.

The alternate to that, though, is being angry, frustrated and ultimately not as healthy.

Not being angry and frustrated toward them is monumental task that I fail most of the time. I think its a good practice to take on though because a) it leads to more peace and it gives the opportunity for understanding where the other person is coming from. I don't get there most of the time but it's good to know that it's possible

 

[Cort]

Hello, @Empty. I often have trouble interpreting what is going on in Twitter conversations, but I think that the reason James Coyne blocked Angela Kennedy was because of something she said in a private message. Then in a tweet he explained that he would block anyone who attacked other ME/CFS patients. People tweeted nasty things about Cort after James Coyne recommended Cort's article on Brian Walitt, and I read somewhere that people were going after Julie Rehmeyer (although I don't know if that happened on Twitter). In the meantime Jen Brea, when challenged on Twitter by a person who doesn't like that Jen has been paying herself a salary out of the money donated to her to make a film, threatened to quit -- not finish the film? Oh, also, I saw on Phoenix Rising that people were attacking Brian V. (?), former NIH employee, for trying to calm PR members furious over the appointment of particular scientists to the upcoming NIH research project.

I'm glad that he recommended the article. I can understand people being upset about Walitt. As I thought about it I realize that I see things a bit differently. I got so engrossed by the research that I ended up not caring about what Walitt called the disease but for most people the conversation got completely stopped when he used that awful term. That's entirely understandable. It's worse than calling ME./CFS depression because at least depression is serious! It took me a while to get that.

I'm sorry to hear that about Jen though. I got the same thing with Phoenix Rising at times. (But how would I survive ???) Lordy...

I think everyone such a Coyne or Koroshetz or Collins is kind of stunned by the ME/CFS communities anger when they first confront it. That's the reflection of a community, I think, that knows it's been screwed around and it knows it like few other communities do - even those other communities that have been screwed around.

I think a despair is present as well or a fear that everything is going to fall apart...Until we get something significant going I think the fear that something underhanded or wrong could be going behind the scenes to screw us is going to be present. It's like being beaten for 20 years - even if the beating stops you can't really believe its not going to happen again.

If we get something really significant going I think there's going to be huge collective sigh of relief. Then the next hurdle will be finding something significant. Then there will be an even bigger collective sigh of relief.

Then I think we'll be able to relax a bit. Until then it seems like everything is on eggshells.

 

[Empty]

Hello, @Empty. I often have trouble interpreting what is going on in Twitter conversations, but I think that the reason James Coyne blocked Angela Kennedy was because of something she said in a private message. Then in a tweet he explained that he would block anyone who attacked other ME/CFS patients. People tweeted nasty things about Cort after James Coyne recommended Cort's article on Brian Walitt, and I read somewhere that people were going after Julie Rehmeyer (although I don't know if that happened on Twitter). In the meantime Jen Brea, when challenged on Twitter by a person who doesn't like that Jen has been paying herself a salary out of the money donated to her to make a film, threatened to quit -- not finish the film? Oh, also, I saw on Phoenix Rising that people were attacking Brian V. (?), former NIH employee, for trying to calm PR members furious over the appointment of particular scientists to the upcoming NIH research project.

Thanks for the subtitles There is a long and complex history which I do not understand so can't really comment, yet. Will try and understand a bit more.

 

[IrisRV]

People tweeted nasty things about Cort after James Coyne recommended Cort's article on Brian Walitt, and I read somewhere that people were going after Julie Rehmeyer (although I don't know if that happened on Twitter). In the meantime Jen Brea, when challenged on Twitter by a person who doesn't like that Jen has been paying herself a salary out of the money donated to her to make a film, threatened to quit -- not finish the film? Oh, also, I saw on Phoenix Rising that people were attacking Brian V. (?), former NIH employee, for trying to calm PR members furious over the appointment of particular scientists to the upcoming NIH research project

There are some seriously angry people out there who need to get themselves under control. Assuming they are the ME patients they claim to be, they're not doing the rest of us any favors. Disagreement is one thing, personal attacks are another.

ETA: I realize that that sounded as if I think patients shouldn't be angry. That wasn't what I intended to say. I'm angry about the way ME/CFS patients have been treated. Very angry. Most of us are, and rightfully so.

What I'm trying to say is that letting our anger control us to the point where we lash out at everything doesn't help us move forward. It holds us back. Lashing out at advocates like Cort, or Jen, or Brian is counterproductive, to say the least.

We are not all going to agree on every aspect of every advocacy campaign -- or anything else. We don't have to. There's lots of room for different perspectives. It is not necessary to rip apart advocates who aren't going exactly the direction you think they should.

Some people need to think about using their anger for construction not destruction.

 

[Beth from Oz]

"Some people need to think about using their anger for construction not destruction."

I couldn't agree with you more.

It's better to be angry than resigned. I think I've become resigned and complacent, which is great for moping about but useless for activism. Misplaced, misdirected and misfired anger can be detrimental to everyone caught in the blast radius.

It would be great if patients could have a vote on what research is done, and by researchers we could put our trust in. Putting trust in some of these institutions can feel like trying to mend a relationship with an abusive partner who swears they have reformed; but we need them and the potential help they can give.

An apology might be nice. And maybe a voted upon representative to be the communities' voice in decision making and to air our concerns directly to decision makers.

Though I'm going off topic. Sorry.

 

[Cort]

I

"Some people need to think about using their anger for construction not destruction."

I couldn't agree with you more.

It's better to be angry than resigned. I think I've become resigned and complacent, which is great for moping about but useless for activism. Misplaced, misdirected and misfired anger can be detrimental to everyone caught in the blast radius.

It would be great if patients could have a vote on what research is done, and by researchers we could put our trust in. Putting trust in some of these institutions can feel like trying to mend a relationship with an abusive partner who swears they have reformed; but we need them and the potential help they can give.

An apology might be nice. And maybe a voted upon representative to be the communities' voice in decision making and to air our concerns directly to decision makers.

Though I'm going off topic. Sorry.

I like the analogy of the blast radius . Sometimes it's like "ready, fire, aim!" You might just kill off someone very helpful like Jen Brea that way....

 

[Merry]

I just finished reading the comments to James Coyne's blog post and recommend them. Some of the writers explained to James that because they have been ill since childhood, his premise doesn't apply to them. Others pointed out how very different the situation is for people with ME/CFS than for someone with diabetes, an accepted, well-researched illness.

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

 

[Dx Revision Watch]

Hello, @Empty. I often have trouble interpreting what is going on in Twitter conversations, but I think that the reason James Coyne blocked Angela Kennedy was because of something she said in a private message.

No Merry, that's not correct.

Angela had sent no Private Messages to Coyne.

He had objected, publicly, several times, to Twitter comments in which Angela had raised some concerns around Cort's commentary re Walitt. He then threatened, via Twitter PM, that he would block her and that he would also encourage others to block her. Then he blocked her.

Screenshot here:

https://twitter.com/AcademicAnge/status/703207158611996673


He also blocked me, back in November, when he (mistakenly) thought I was criticizing his presentation in Edinburgh. Had he slowed down and read a series of Tweets that he happened to have been be copied into, along with two others, he would have seen that the subject of the Tweets was not him, at all, but Prof Peter Denton White.

----------

If not already on this forum, this thread bears scrutiny, too:

https://www.facebook.com/groups/5804522506/

 

[Merry]

No Merry, that's not correct.

Angela had sent no Private Messages to Coyne.

He had objected, publicly, several times, to Twitter comments in which Angela had raised some concerns around Cort's commentary re Walitt. He then threatened, via Twitter PM, that he would block her and that he would also encourage others to block her. Then he blocked her.

Screenshot here:

https://twitter.com/AcademicAnge/status/703207158611996673


He also blocked me, back in November, when he (mistakenly) thought I was criticizing his presentation in Edinburgh. Had he slowed down and read a series of Tweets that he happened to have been be copied into, along with two others, he would have seen that the subject of the Tweets was not him, at all, but Prof Peter Denton White.

I beg your pardon.

 

[Dx Revision Watch]

I beg your pardon.

That's OK. I have Angela's permission to set the record straight.

 

[Merry]

I have Angela's permission to set the record straight.

The irony. The truth actually makes Angela look worse. This is, after all, Cort's website.

I am new to Twitter and only joined to follow James C. Coyne and only understand snippets of what is going on. I saw no tweets by Angela.

Twitter is definitely not a good format for discussing issues. Dueling with hatpins.

 

[Empty]

No Merry, that's not correct.

Angela had sent no Private Messages to Coyne.

He had objected, publicly, several times, to Twitter comments in which Angela had raised some concerns around Cort's commentary re Walitt. He then threatened, via Twitter PM, that he would block her and that he would also encourage others to block her. Then he blocked her.

Screenshot here:

https://twitter.com/AcademicAnge/status/703207158611996673


He also blocked me, back in November, when he (mistakenly) thought I was criticizing his presentation in Edinburgh. Had he slowed down and read a series of Tweets that he happened to have been be copied into, along with two others, he would have seen that the subject of the Tweets was not him, at all, but Prof Peter Denton White.

----------

If not already on this forum, this thread bears scrutiny, too:

https://www.facebook.com/groups/5804522506/

Thanks for that correction. I saw the tweets from November, did Coyne apologise about that misunderstanding? If that is the right misunderstanding, he did.

Can anyone remind me who AK is (sorry)?

I don't know what is wrong with me but I just can't see anything wrong...

 

[Empty]

The irony. The truth actually makes Angela look worse. This is, after all, Cort's website.

Is it appropriate for you to elaborate on this? What has Cort's website got to do with it? I can not see which truth makes AK look worse. Apologies to all but I am trying to understand everything so that I can advocate better. I need some of these gaping gaps filling in.