[RD] Ask a Person with ME/CFS

[9gkj548hkm20vk79dj689bnj4]

Do you mention this very much to people at all?

I try to mention my own problems less and less because, as you say, everyone seems to have an opinion on your condition.

 

[Synobun]

Do you mention this very much to people at all?

I try to mention my own problems less and less because, as you say, everyone seems to have an opinion on your condition.

It used to be something I told no one, but now I'm relatively cavalier about it. I don't expect acceptance or understanding anymore, so there's less risk involved in people knowing.

I do, however, limit how much I tell, even to those who are closest. Stagnation is a big part of the illness and people have very little patience for things that do not change. They can only hear "I feel terrible" so many times before they avoid you. And people get awkward when you go into detail about how badly you're impacted. They do not know what to do with it, and usually choose silence or abandonment as a response. I don't blame them for it, but it's not an experience I invite into my life anymore.

 

[E.man]

Have you ever had a doctor try to get you to do graded exercise therapy? The CDC stopped recommending it a few years ago.

I collapsed with undiagnosed kidney disease and ended up in hospital a couple of years ago.
They tried to make me do exercise for my 'fatigue ' while was there. I sent them away with a bee in their ear and my records were marked as 'non compliant.'

Exercise when I was there for kidney disease !?
Bloody idiots.

 

[E.man]

Do you mention this very much to people at all?

I try to mention my own problems less and less because, as you say, everyone seems to have an opinion on your condition.

I tend to mention it quite readily to explain why I need help.

I can now say I have a 'post viral injury ' which ppl have become familiar with.

 

[Valka D'Ur]

People, in general, have no idea what they're talking about but like pretending they're geniuses with a secret no one else knows.

The paper pushers who work in home care or other agencies are some of the most clueless people ever. They work in an office, not with the clients, so they have no idea wtf they're talking about.

Every time I hear someone say in an impatient, judgmental tone, "Can't you just ______?" I want to reach through the phone and slap them. No, I can't "just _______". If I could, I would. But I can't, so that's why I need help for certain things.

It used to be something I told no one, but now I'm relatively cavalier about it. I don't expect acceptance or understanding anymore, so there's less risk involved in people knowing.

I do, however, limit how much I tell, even to those who are closest. Stagnation is a big part of the illness and people have very little patience for things that do not change. They can only hear "I feel terrible" so many times before they avoid you. And people get awkward when you go into detail about how badly you're impacted. They do not know what to do with it, and usually choose silence or abandonment as a response. I don't blame them for it, but it's not an experience I invite into my life anymore.

I remember a time during the first science fiction convention I attended after I started using canes. Normally children didn't attend those events, but this time I encountered a woman with her kid (about 7 or so). The kid asked me why I was using canes. He wasn't obnoxious or laughing at me. He was just curious.

His mother promptly shushed him, as though he'd said something dirty. As though using canes was something she assumed I would get angry at him for asking about, and it wasn't polite to draw attention to it.

So I told her, "I don't mind being asked, as long as it's a polite question. Your son asked politely, so I'm going to answer." I then explained to the kid that I had trouble walking at times and the canes helped me not to fall if I got tired or felt dizzy. He thought it over and was fine with that explanation.

Polite questions deserve an answer, as far as I'm concerned. It could make a difference in how the questioner treats other disabled people in the future.

I collapsed with undiagnosed kidney disease and ended up in hospital a couple of years ago.
They tried to make me do exercise for my 'fatigue ' while was there. I sent them away with a bee in their ear and my records were marked as 'non compliant.'

Exercise when I was there for kidney disease !?
Bloody idiots.

I don't why I wore that ID bracelet in the hospital when I was last there. One nurse was insistent that she was going to take me for a dialysis session and wouldn't believe me when I told her I wasn't there for that reason. I told her my roommate was, but I was there for a different reason - check my file, already.

Another one started yapping at me for a different reason that was also completely unrelated to why I was there. She, too, wouldn't believe me until I told her to check my file.

And then there was the nurse who insisted I eat oranges even though I told her I'd had to cut oranges from my diet nearly 20 years previously, due to severe ulcer/acid issues. She kept insisting they were good for me. Apparently the fact that I can't keep them down is irrelevant.

 

[Narz]

All those stories of overcoming the odds never mention the over-comer used exhaustible willpower, they never suffer a lack of that critical energy resource that is the primary part of the disability.

Everyone has exhaustable energy, when you're in chronic pain you just can't be in denial of it.

 

[aimeeandbeatles]

any thoughts of identity-first or person-first language? "Disabled person" vs "Person with a disability" (personally, I rage at "living with" a disability - which makes it sound like disability is a roommate)...

Do ME/CFS people have any common nicknames for themselves? For example, I've seen "Crohnies" for people with Crohn's Disease.

A client last year told me I would be cured if I put slices of onion in my shoes.

sounds like a waste of a good onion more than anything.

 

[Narz]

sounds like a waste of a good onion more than anything

Might help w smelly feet (or make them worse)

 

[Valka D'Ur]

I have no problem identifying myself as being disabled. What angers me is how non-disabled people tell me I'm supposed to identify myself, and how some people and even government agencies label us.

For instance, during the provincial election of 2019 I had an incredibly unpleasant experience at the Returning Office that served as the advance polling station for my riding. I used to work for Elections Canada in the '80s and '90s and hadn't given much thought to the wording for the procedures used for disabled voters. But now that I am one of the disabled voters... it's frankly insulting. I'm thankful that I know the procedures and my rights so I can tell immediately when I'm being brushed off, dismissed, and lied to because the Returning Officer finds it inconvenient to deal with my situation, and I'm not shy about calling them on it.

We're labeled as "Incapacitated Electors". That, to me, sounds like "incapable, not fully mindful". It gives off vibes of the elector not being of sound mind, not able to understand the procedures, and I've already had the experience of being told directly that "I didn't know people like you could vote".

I'm going to have to go through this again in two months' time. It's going to be yet another round of answering intrusive questions that demand to know why I want to vote in a way that is allowed, but not "normal". I should not have to justify this, and should not have to be labeled in a way that assumes that all disabilities are the same and we all need to be "helped" in ways we might not need or want and have to listen to the Returning Officer and his staff grumble about having to fill out the Incapacitated Elector form.

It's really not that much extra work - certainly less work than if I'd brought a helper with me to mark the ballot for me or if I'd asked a staff person there to do it. That would have required them to take and sign the form for Oath of Friend of Incapacitated Elector (promising to mark the ballot as the "incapacitated elector" tells them to).

 

[aimeeandbeatles]

"Persons with different/diverse abilities" is one that kind of baffles me too. Because.... that's everyone? Some people can't play a guitar, while others can.

 

[MrCynical]

Have you ever been a part of any research studies into ME/CFS? Or know people who have been?

I know this area is infamously underfunded. I'd never encountered even a proposal for funding a project into ME/CFS until last year - and now it seems to be almost exclusively approached from the Long Covid angle. Similarly it's incredibly rare to see it brought up at conferences and so on.

With some signs of more funding and interest, do you have any opinions on how research studies in this area should be handled, or what direction they should go in?

 

[Valka D'Ur]

"Persons with different/diverse abilities" is one that kind of baffles me too. Because.... that's everyone? Some people can't play a guitar, while others can.

"Differently abled." Like it takes some special ability to use canes or a walker.

Granted, it takes a little time to get used to, so you're not tripping - but it's not something that only disabled people can do.

 

[E.man]

any thoughts of identity-first or person-first language? "Disabled person" vs "Person with a disability" (personally, I rage at "living with" a disability - which makes it sound like disability is a roommate)...

Do ME/CFS people have any common nicknames for themselves? For example, I've seen "Crohnies" for people with Crohn's Disease.


sounds like a waste of a good onion more than anything.

I've seen MEEPS used. As in ME Peeps (people).

 

[Kyriakos]

It used to be something I told no one, but now I'm relatively cavalier about it. I don't expect acceptance or understanding anymore, so there's less risk involved in people knowing.

I do, however, limit how much I tell, even to those who are closest. Stagnation is a big part of the illness and people have very little patience for things that do not change. They can only hear "I feel terrible" so many times before they avoid you. And people get awkward when you go into detail about how badly you're impacted. They do not know what to do with it, and usually choose silence or abandonment as a response. I don't blame them for it, but it's not an experience I invite into my life anymore.

I hope you'll get a lot better.

 

[Synobun]

any thoughts of identity-first or person-first language? "Disabled person" vs "Person with a disability" (personally, I rage at "living with" a disability - which makes it sound like disability is a roommate)...

Just call me disabled. I reject person-first language. I also reject the social model of disability (for at least this disability). There is no level of accommodation or acceptance by society that would make this disability tolerable. It is inherently horrible and irredeemable. A cure or realistic treatment is the only path forward.

Do ME/CFS people have any common nicknames for themselves? For example, I've seen "Crohnies" for people with Crohn's Disease.

At some point, calling ourselves part of the "millions missing" wasn't unheard of. But beyond that, no, not really, not that I'm aware of. When I want to make normal people uncomfortable, I call myself a cripple, because according to their textbooks, such a word is strictly verboten.

Some utilize the catch-all term of spoonie, but meh. I'm not sure that version of the energy theory actually works all that well for CFS.

 

[Synobun]

Have you ever been a part of any research studies into ME/CFS? Or know people who have been?

I know this area is infamously underfunded. I'd never encountered even a proposal for funding a project into ME/CFS until last year - and now it seems to be almost exclusively approached from the Long Covid angle. Similarly it's incredibly rare to see it brought up at conferences and so on.

With some signs of more funding and interest, do you have any opinions on how research studies in this area should be handled, or what direction they should go in?

Nada. I was part of the Complex Chronic Diseases Program here in Vancouver for a short time, but back then they were still using treatment plans from the 70s and nothing from the newer criteria.

I'm also seeing all the attention center on Long COVID. I have conflicted feelings about it. A lot of people with Long COVID outright reject the notion they could actually have ME/CFS, and most articles portray it like post-viral illness is this new thing that's come out of nowhere. Then you have the issue where studies and grants reject ME/CFS from their populations, because ME/CFS is an anchor that sinks the ship. I worry that all the attention on Long COVID will be cordoned off from us and we'll continue to just waste away, repressed from common parlance and perception.

If I had my way, I'd invest more into differentiating between the different kinds of Long COVID and then investing accordingly into the ME/CFS cohort. Right now, Long COVID includes both the people with ME/CFS and the people with organ damage, and I think that'll inevitably make things a lot more difficult so long as they're lumped in the same group. You could prescribe exercise to the latter group, for example, and see good results, and then suddenly exercise is recommended for everyone with Long COVID, despite that being harmful to the group that has CFS.

But in order for that differentiation to happen, ME/CFS will need to no longer be a derided, ignored condition. And I'm not sure that will happen anytime soon. Even to this day, most medical schools either ignore it or openly mock it. It's not included in continued education. All the studies and case reports have to be sought out independently by a doctor, so you will never meet a doctor who knows anything about it unless they're specializing in that kind of patient group—and even then, many border on quack science who recommend homeopathy, cleanses, etc.

 

[thetrooper]

Vancouver? What happened to Tronna?

Anyway, just passing by to say that I cheer for you

 

[aimeeandbeatles]

Are you aware of any depictions of ME/CFS in fictional media, and (if so) what thoughts on them?

 

[Synobun]

Vancouver? What happened to Tronna?

Anyway, just passing by to say that I cheer for you

I've never lived in Toronto. I grew up relatively near Toronto, and ended up a Leafs fan mostly because my dad was one. I flirted with the idea of switching to the Kraken when Seattle entered the league, but then I saw how they handled the draft and I decided to stick with the original.

 

[Synobun]

Are you aware of any depictions of ME/CFS in fictional media, and (if so) what thoughts on them?

None that I'm aware of. I've seen depictions of fibromyalgia, and they're always portrayed as lazy, good-for-nothing malingerers, so I have no real desire to see anyone attempt representation for ME/CFS. Technically, representation would lead to better exposure, but the only people with the funding necessary for it are the same people who think so little of us.

There are a few documentaries. I've only watched two, Unrest and... something else. I kind of purged the second from my memory because it was an edited hit job (which connects to my point above). Unrest is decent for a layperson, but eventually the creator got diagnosed with craniocervical instability (CCI) and has been somewhat in remission since getting invasive surgery to fix it.

Looking it up, there's this:

On King of the Hill (1997- 2010) a character pretended to have the disease to demand workplace accommodations, then sprawled on the office couch all day. In October 1999, a character on The Simpsons (1989 – present) joked that the disease belonged to the “chick stuff” section of a newspaper.

Oh, actually, I do remember one depiction. We were in House M.D. and we were diagnosed with a pyschosomatic mental illness (fancy term for "you're making it up") and subsequently cured with mints. Kind of funny that even in the "We'll never rest until we cure you" show, we're still nothing more than a joke.