‘Healthy Privilege’ – when you just can’t imagine being sick

I saw that recently somewhere - can't remember where - and it's stuck in my head. So true.

 

I think that there's something to that, but that it's also true that we all tend to be thoughtless about the injustices faced by others, and that plays a role in generating further injustice.

re understanding ill-health: when I come down with a cold, or some other short term illness, I find that just a few days after getting better, I can really struggle to truly understand what it was like being ill in the way I had just been. The memories of it often seem to fade like those of a dream.

I'm not willing to spend a lot of time and effort trying to understand all the other hardships faced by others as I have other things I want to do with my time. At the same time, I try to remind myself how little I understand about the injustices many other people will face, and hopefully that will lead to some instinctive compassion and caution.

When the ignorance of others seems to distort their views on important matters, that should be pointed out and challenged, but when people are just being a bit thoughtlessly caught up in their own view of the world it's worth tempering any criticism of them for that with an awareness that humans just seem to be like that.

 

Lack of personal experience is usually the main factor in lack of understanding, empathy, and sympathy.

 

I agree with part of this. If these words are used simply as an accusation, a way to feel better than someone else who may be ignorant about something, then it's not helpful. What's the point of making other people angry?

But I think there are ways to talk about privilege in a way that teaches something new and helps others understand. And then the goal should be to work toward positive changes.

Some people are more skilled at talking about these issues than others. I'm not very good at it most of the time.

I do hope people (of all types) can try to be less defensive and try hard to listen. I think I'm mostly telling myself this. It can be very hard to listen without jumping in to defend yourself.

 

I think the author is blending several phenomena and confusing them with privilege. Health apps are marketed at healthy people because they're a bigger market than any specific disease or group of diseases. They probably don't understand illness, but that's irrelevant - their job is merely to make money, and a bigger profit can be made with less investment. Inability to see invisible illness isn't due to privilege. It's due to the illnesses being invisible, and people not being psychic.

Being healthy is a privilege in many ways. But if someone doesn't empathize or understand despite being told of what someone's going through, it's not due to privilege. It's due to them being an self-centered asshole

 

“Healthy privilege allows healthy people to assume that their experience is ‘normal’, and to be unaware that coping strategies that work for them will not work for someone dealing with illness.”

This stood out.

(ETA: Though I agree that I dislike the name calling inherent in the 'healthy privilege' title because all too often people use these terms to put a sequin on lazy thinking. I'd like this to say: “Healthy people too easily assume that their experience is ‘normal’, and are unaware, sometimes willfully, that coping strategies that work for them will not work for someone dealing with illness.”)

 

Oh, and I loved my digital tracking device. It meant I didn't have to remember to log activities, nor focus on illness and symptoms when I didn't have to. I wore it 24/7 and it meant I had objective logs instead of just my word for it (a huge part of taking it seriously and learning to manage and avoid most full crashes).
The strap has broken irreparably for the second time so it sits unused on the shelf. And I am experiencing a recovery from crash for the first time in a month or more - no handy dial to show how far through my activity quota I got.
Yes, it would be great if the software let me focus on doing less and being consistent instead of getting more and more shrill in its boot camp attitude with every update.

 

One thing that must be remembered is that a lay person's perception of ME/CFS is almost certainly based on what little information they have been exposed to through "expert" and government sources for the last 30 odd years. That is to say, they think it is "all in the head," depression, "false illness beliefs," "deconditioning" or just some extreme form of "ennui." And certainly, if it were serious, the government would be spending a LOT of money on it, right? So, nothing to see here.

It's not so much the general public's fault as it is the fault of the people they are getting there information from. Were it not for personal experience, I sometimes wonder how I would regard ME/CFS in light of how it has been presented by "knowledgeable sources" for the last three decades. It kind of makes me shudder.

Things seem to be slowly changing in the US now, but it may be a long time before we see an official move to atone (i.e. to allocate equitable money for research).

A formal apology, however, would cost them nothing. I'm waiting.

 

I guess many people don't know how ME is - or how being sick is. Before ME, I was convinced that exercise always is good; now I make a different experience. And although I still think exercise/moving around is essential for humans, I now know there are exceptions.

But it's very common: If one lacks experience, empathy and thinking, that person won't understand another's position, e.g. with regard to health, feelings etc. I think maybe you can't feel how it is (due to lack of experience) but you can grasp it intellectually by listening and watching and taking people seriously.

 

I admit (shamefaced) that I was very judgy ages ago, before I was sick, though I did not know it, when I had a colleague with Fibro, and a client with severe MCS. It was the first time I had met people with these conditions and the first time I had had to use a specified personal care regimen to interact with my client. This was long enough ago that these were not as commonly known or understood (?!) as they are today.

I was at the peak of my own fitness and wellbeing. I felt (wrongly) like I had figured out the key to a vibrant happy life on some level. As someone who considered herself quite openminded and --so I believed-- nonjudgmental, it surprises me to look back and see what my "healthy privilege" blinded me to. Whatever extremely limited info on these conditions I had been led to believe via a shitty headline or two, some crap buzzwords and a lot of projection, it seemed like the whole picture to me at the time. I did not think to question the comprehensiveness of my points of view.

The woman with MCS made her husband change clothes and shower in an outbuilding every time he entered the house, and she herself never left it except for the small garden she would potter in from time to time. She sent me shampoo etc without scent (which was not a Thing back then) so I could work with her at her house. The woman with fibro was unable to fulfill commitments or keep appointments, though she looked 'perfectly fine'. I had never heard of Wessely or ME or barely of MCS (though I was perfume intolerant myself already) yet I decided these women had fallen into self-limiting belief systems. I really thought that. I'm so ashamed of that now. I had no understanding of their experience, and what lengths they were going to just to have...a day.

I had no idea that I had already begun the terrible slide towards this wretched hell of ME, MCS, OI, Fibro, Lyme, CIRS etc.
Who knew I myself would be the housebound weirdo, with a stash of unisex guest clothes, requiring scented visitors to shower and change if they desire the dubious pleasure of my company? I'd have never guessed I would go from stringently punctual and reliable to someone who avoids making commitments for fear of not being able to keep them due to symptoms. It's like life had been giving me not the key to a vibrant happy life, but instead a deeply compassionate one. The hard way.

 

That's both so honest of you @Allele, and so understandable.

When my son went down with ME in 1989, I knew he was really ill - I never doubted him at all. A healthy 8-year old doesn't lie around ill on the settee with headaches etc all through the summer holidays! But even then, I never realized truly how bad it was until I went down with it, and I am one of the lucky "moderately ill" ones. It is really hard for healthy people to get their heads around.

Perhaps one useful question we could ask them is how ill they would have to feel day after day to be living the kind of life that we do. Only those who are able to empathise will be able to do it: if they can't, then nothing else will.

 

They only concession I make to the psychs is that I cannot guarantee I would have behaved any better if I was in their position.

I like to think I would have, but cannot be certain of that untested hypothetical.

 

I don't think you would, @Sean, not because you are such an amazing person, which of course you must be as a member of s4me, but because, like most of the people here, you have a need for accuracy and evidence. It is the refusal of the psychs to see that the evidence either doesn't support them, or disagrees with them that is crucial.

 

I suspect we may have evolved this way to ensure that while we are lucky enough to be well, we don't divert our activities with excessive preoccupation about the possibilities of becoming ill. It might also partly account for why it is so hard to get healthy people to identify with those who are ill.

 

With some individuals however it is just down to ... lack of understanding, empathy, and sympathy .

 

I vital human trait ... lest you do it on the seat!

 

As a reasonably healthy person, I find the term "healthy privilege" a tad sanctimonious. It feels wrong to me to expect healthy people to feel privileged to be healthy. There is no special right being bestowed on people to give them their health, nor should there have to be, nor should anyone expect there to be ... heaven help a society where that were the case.

In fairness, I suspect it is just the terminology I'm mainly objecting to, but I'm struggling to find an alternative. Not so much privilege, but unwitting blindness.