Perception of a PWC

[xchocoholic]

I'm sure many of you are running into this too.

I'm physically and mentally fatigued most of the time so I sound whiney even tho I'm not aware of it. It has to do with having little energy and strength in my body. I suspect weak lungs, OI and chronic low blood sugar aren't helping.

People treat me differently based on what they perceive. Some are kind and helpful especially if I'm in a motorized cart.

Some treat me like I need to get out of their way whether I'm in a cart or not.

And some, friends and family mostly, talk to me like I was a child by explaining simple things to me. I'm 58 so that's really annoying.

So I'm good with the ones being kind but recently learned that sometimes that kind voice is really condescension. Sometimes these people think I'm stupid because I don't have the energy to constantly argue with them. You know the type.

FWIW, I'm not sure how I'd perceive a pwc if I didn't have this myself. I was always kind to people but would imagine after a few years of trying to have a conversation with me (pwc) I'd give up too. I can only imagine how cfs doctors cope with this.

Being pwcs we understand how our minds can be tired but that doesn't mean we've lost our abilities to learn or express ourselves completely. We're just trapped in these weak bodies.

Anyone else frustrated with being treated like someone you're not ?

 

[lansbergen]

And some, friends and family mostly, talk to me like I was a child by explaining simple things to me. I'm 58 so that's really annoying.

Nobody ever did that to me. If they had I would have responded furious.

 

[xchocoholic]

Nobody ever did that to me. If they had I would have responded furious.

I don't have the energy. That's the problem.

Peoples perceptions of me are based on what they see or hear from me but they don't understand what they're seeing or hearing could be because I'm too tired at that moment to respond the way I would if I was healthy.

I actually had a relative tell me recently that he's been looking after me since I became ill. I've been sick 24 years and only stayed with him for a few weeks/months years ago over 16 years ago. I've taken care of myself and raised a daughter 99% of the time on my own since becoming ill.

He perceives his influence in my life to be more important than it really is. I'm assuming that's because he sees me as sickly. I just wonder how many others feel this way.

It's totally delusional as far as I'm concerned. But I wonder how often healthy people see themselves carrying the disabled ones.

tc ... x

 

[SickOfSickness]

I have experienced some of that. I avoid dealing with people, so not as much as many pwc would experience.

Something similar that I go through a lot is: a person knowing some of my symptoms and problems, but being unaware of lots. I would get what you said, them thinking they are being so helpful when they are actually making some symptoms worse.

It's not their fault mostly, it is just that horrible invisibility of our illness, being too weak or embarrassed to explain, etc.

 

[xchocoholic]

exactly. I caught myself being insensitive to people who need walkers a few months ago so I see how this works. In my defense, I have chronic OI and really can't tolerate standing still so I was just trying to move.

It has to be eye opening for medical professionals to see how functional some people are compared to others. From my experience, CFS doctors certainly understand our functionality better than anyone. One minute we're intelligent and the next no-so-much. ; )

CFS being taunted as psychological never helped either. I look depressed and can't speak in complete sentences when I have PEM so some people thought I was depressed. They were never smart enough to see that it was post exertional malaise.
And I'd never heard that term until I got in the web in 2005. Those of us on the web have come a long way but I'm sure some of the people in my life have no idea what me/cfs really is. Afterall I'm too stupid to understand what I'm reading. haha

tc ... x

 

[SickOfSickness]

Same here with PEM and depression. I admit I have some depression too, sometimes more than others, but it's mostly PEM.

People rarely understand it takes me a long time to recover. It seems like they can only imagine me taking twice as long (at most) as they do.

They don't understand my sensitivities to light, sound, chemicals, medications, food, etc. Like I said above, they can only imagine so far.

The list goes on and on about what people don't get because we have so many physical and mental and emotional things to deal with.

 

[SickOfSickness]

I feel like people get more sympathetic if they get a flu or something resembling part of our symptoms, but it's human nature to forget how bad it was. Even with the constant M.E. symptoms I do the same, where a partner gets the flu and I am not remembering how terrible the flu can be. If I had the flu a month before then I am more sympathetic.

 

[*GG*]

I for the most part just deal with family.

"And some, friends and family mostly, talk to me like I was a child by explaining simple things to me. I'm 58 so that's really annoying."

I think I need to have things explained to me as though I am a child. And my brain fog is not as bad as it used to be, could be because of the demands put upon me in my new living situation, next to my sister and helping with the kids! I don't have my own kids, so never been a parent and not thinking of everything, but healthy people don't think of everything also!

GG

 

[xchocoholic]

It just dawned on me why some people treat me like I'm an idiot. Sure as a pwc I can be but not always.

In their minds medical info can only be understood by geniuses like them.

Having patients, especially those with limited cognitive abilities understand and accurately diagnose and treat themselves
undermines their authority and eventually affects their paycheck.

Not to mention what it does to those who's egos are dependent on feeling superior.

Not that I don't appreciate how complex medical info can be. But not all of it is.

g nite. x