Wednesday, September 13, 2006

Am I Disabled?

I've been trying to figure out just how we can be two people at once. The reason being that it seems that we're expected to be two totally different people at the same time.

We're told that if we were really that ill we'd be going to the doctor's office much more often. The first thing out of most people's mouths the minute they ask "how are you doing?" and you give them an honest reply is "have you seen the doctor about that?", as if of course the doctor would have some magic bullet to fix you right up instantly. Of course we might be able to avoid those people. But for those who are receiving any kind of disability there is the perpetual mounds of documentation they're after as proof, despite the fact that you've already been diagnosed twenty some years ago and there is no cure nor any real treatment that works.

There's been more than one of us who've run smack into the royal guardians of disability benefit funds who seem to be paid by the number of people they deny, or dump off the rolls. They absolutely will not believe you're still ill, it seems, unless you've dashed to the doctor frequently and had yet one more test to prove it --- though in the case of CFS/ME, FM and MCS there really is no test. So it seems that it's repeated trips to doctor's and his notations on your chart they're after. And all this at a time when we're told the health care systems are overburdened?

On the other hand -- and here is where the need for split personality comes in ... How many times has it been implied to us that we're just hypochondriacs who whine about every little symptom we have? -that very list of symptoms upon which the diagnosis is based. How many trips to the doctor does it take once one is diagnosed to realize that there is really absolutely nothing that the doctor can do for us but take up his time? (and possibly get another one of 'those looks' for bothering him again about a weird symptom which he may have concluded is just lunacy? --which might indicate it's time for a new doctor by the way) We're looked upon as being mental if we run to the doctor too often. What is too often?

How can we be both at once? Because we sure seem to need to be!

But perhaps I have the supreme question of all yet to ask here. The question is, Am I disabled? Is one disabled if a doctor hasn't labeled you as such? And why would a doctor give you that label if there was no one to show that label to? In other words, if one has no disability benefits program to apply for there is no paper. And if there is no paper, are you disabled? (seems one needs a doctor's note to declare such before it's taken as fact)

I wonder about this sometimes when needing to explain to some new person why I can't do thus and so, ever. After twenty-six years of ongoing illness (I use the term illness with CFS/ME in mind because it is a chronic illness) , many of those day spent mostly in bed, barely being able to care for myself, I definitely haven't been able to work consistently enough nor enough hours to earn what anyone would consider a livelihood... and it seems it is by that measure that most define being disabled. Or is it rather that if you're not disabled or dying they think you should have a job and/or do something?

Honestly I've been real tempted... One of these days when someone starts the grilling I just may retort, "Oh! Well I'm independently wealthy, lazy, and just do what the heck I want to!"

Do you think they'd respond the same way?



Blogger Linda said...

HI! I was glad to come across your blog! I too have CFD/Fibro/whatever else they are calling it these days. I also have Interstitial cystitis, arthritis, migraines and irritable bowel. One doctor asked me if I have an anxiety problem and I was like "YOU THINK??!!" Sure we are stressed - we are SICK and we HURT!! Grr at the medical establishment! LOL I too am from BC, Canada. Love your blog!!

2:13 PM  
Blogger Zona said...

Hey Linda! So glad you dropped by :) Email me at ... I'd love to yak with you.

where in BC are you?


11:09 PM  
Blogger Sunamizen said...

Fell inot yer blog looking for Truth or C, NM links for MCS..
SuzyQ here from VT---
MCS/FM/PTSD/MSG/PHOSPHATE allergic...plenty more....Babesiosis...universal reactor..can't take meds...can barely eat...gittin' skinnier...ANXIOUS? Ayup..around the next bend is another idiot wearing Bounce Fabric Softener...
Smoking a butt and and reeking of Tide...putting Tricalcium phosphate soap on and injecting msg secretly in the meat supply..just for me!
I could go on...
Good Blog..was looking into relocating but see the Schmoke is baaddd....SMOKE kills it's MOLD...wetness causing rot-mold...fumage all over...just dark and sun...fungal

6:03 AM  

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