Re: canes, handicapped parking, descrimination

[Guest guest]

I can relate to the dirty looks - after my spinal fusion, I've walked

weird whether I had my back brace on or off. Worse right after

surgery with the brace on. I didn't have a cane, and didn't use a

walker outside of the house - would use the regular carts at stores

to help me walk. I haven't worn a brace or anything obvious like

that in quite a while, but I still have difficulty and pain walking

because of low back pain, sciatica, and knee pain. Some days I can

walk a little more normal (good days - like the early part of a good

day before I've done too much - or the 1st place I stop on a quick

errand) and some days I walk worse (bad days - or the end of good

days when I've come to my limit of how many short/quick errands I can

handle with the excruciating pain/ reached my max of standing/walking

for the day -- my errands always seem to get cut short by my pain)

but I am always in excruciating pain in so many areas of my body,

even in addition to the ones that affect my walking. I have a

handicapped parking tag good for 6 years and boy do people

(especially " seniors " ) give me dirty looks whether it's based on how

I'm walking (good days or bad) and especially if they see me parking

in the handicapped parking.

I'm only 33 (and look very young for my age on top of that - both my

parents have always looked young for their age and I seem to have

inherited it). But despite my young looks, I have relatives in their

80s who can do more than me physically. Both my parents - 60, can do

about a million times more than me physically. My chronic pain

started when I was 24 and got fibromyalgia. I have felt extremely

discriminated against by doctors - especially old male doctors who

look at me and seem to think I'm young and female and I can't

possibly be in that much pain. Many doctors who treat me like it

is " all in my head " . Some days I wish I looked as old/crippled as I

feel, because maybe then people at stores and doctors and even

relatives would understand better how I feel. When my arms hurt so

bad with the fibro that I couldn't use them - sometimes it hurt so

bad I couldn't eat with my right arm, and people kept expecting me to

be able to do so much more than I could, I wished my arms were cut

off or in casts so they'd realize I couldn't use them.

I went to a chronic pain program recently and met some other people

around my age and older who have chronic pain and have been treated

the same way - the looks, rudeness, by people on the street and

treatment by doctors, and someone in the group was recently saying

they wish they had T-shirts or signs on them saying that they're in

pain. One guy was upset about people always bumping into him at

malls or giving him dirty looks when he couldn't hold the door open

and they'd bang into him in the door. Another young woman in a

wheelchair was saying people are always bumping into her, too. I

avoid going to places at times when they are very busy or when/where

I'm likely to get bumped. My pain gets worse and I feel stressed and

on sensory overload in crowded places.

I'm ready to go in on a big group order of T-shirts explaining we're

in pain.

Constant excruciating pain.

Please don't bump me or stare at me or pick on me or be rude to me.

Please be respectful of others.

I'm already trying so hard not to be crabby despite this pain.

Please be nice to me, I just had surgery.

I'd like one I can wear to the grocery store that bags groceries for

you that says - please make the bags light weight and yes I do want

help getting them in my car

(If you're paying more to go to a store that bags the groceries for

you and carts them to your car or where you drive up for groceries,

why do they assume because I look young that I'm going to carry out

huge amounts of groceries that no one healthy person can even carry

all at once? Like when the guy asks if I'm driving up and I'm alone

and I've got at least 3-4 paper bags of groceries AND 8 gallon jugs

of water? I got so frusterated right after surgery always having to

ask people at stores to do the things they are paid to do anyways. I

specifically went to those stores so they would help me and I

wouldn't have to ask. It's hard asking them or admitting how much

help I need. I've gotten much more used to it now after several

years, but I still hate having to ask for things they are

automatically supposed to do at certain stores. A lot of store

employees would look at me weird when I'd ask them to make the bags

light, so a lot of times I'd say I had back surgery or I had car

accident injuries or shoulder surgery or whatever. If I didn't give

some explanation and even occasionally when I did, often the bags

would still be too heavy for me to get out of the car, so I'd have to

take some items out of the bags and carry the items individually in

the house.

Well, enough venting. Thanks a bunch for listening. You're a great

group of people and I'm so glad to know you're here. I do think of

you and send you positive thoughts. I wish I had more time when I

felt well enough so I could read all the posts and respond more

often. Take care.

Mara

[Guest guest]

Mara,

You know, I've thought about getting a handicapped sticker for

those " really bad days " , but have always feared those " looks " , as

well as a lecture from my doctor that I really don't need one, since

exercise is supposed to be good for Fibro. Still, during the times

when my body is writhing in pain, and Walmart is totally packed,

parking in the front instead of the south 40 would be awfully damned

nice!

I can totally relate to how people look at you funny because of your

age and not looking it. I'm 33 too, and get guessed at 25-26 most

of the time. When I talk about having 12 and 14 year old daughters,

people look at me weird, then ask " HOW old are you?? " I'm sure we

will really start to appeciate this genetic blessing in a few more

years!!

While I've never been discriminated against by my doctor...he's

young too, and has been wonderful to me....older people in my life

start going on about THEIR pain, telling me why theirs is worse than

mine. Their bodies are older, and have been through more things, so

therefore, they hurt more. Okay.... Obviously they know nothing

about having a chronic pain disorder! I never knew there was an age

limit on pain!

I belong to a local FMS/CFIDS group in my town, but what really

depresses me about it is that the large majority of the people in it

are over 45, with 3/4 of them being over 50. They're all really

nice people, but sometimes I have a hard time relating to them.

We're starting to get some younger people though, thank goodness! I

need some local connections with younger Fibromites! People my age

who understand what it's like to work, have a family, and all that

stuff with Fibro.

In stores, I almost always use a cart for getting things, unless I'm

only getting a few things, and they're light. Some people look at

me weird, but I don't care. Let em look! None of the stores in my

town have carry-outs, but all of the stores pack the bags pretty

light. We have a fairly large population of elderly, so they must

do it out of habit. It actually gets on my nerves sometimes,

because there are times when they do it to a ridiculous extreme, and

I end up with 5 bags when 2-3 would have been okay. Walmart gets

really bag-happy, but Kroger usually does it just right. I'm kinda

picky, since I used to work in a chain drug store, and was really

particular about how I bagged things! But I still remember when

carry-outs were part of the grocery store service! Now there are

just " baggers " .

I'm like you in stores too. I don't like crowded ones. If I start

getting jostled by people, I get stressed and go on sensory overload

too. It seems like since I started having CP, I can't do large

crowds anymore. I get irritable, and it makes me hurt more. I just

want a t-shirt that says " I have Fibro, please understand me " .

Jen

[Guest guest]

Tealwolf,

OMG! How awful and rude of people! As long as someone has a

handicap tag or plates in their vehicle, I don't pay attention to

what kind of problem they have, because I know they can't always be

seen, but it really burns me up when I see someone parking there who

doesn't have a handicap placard, and literally just about runs into

the store. You KNOW there isn't anything wrong there except

insensitivity and rudeness! The only thing that bothers me worse is

someone " borrowing " a handicap tag so that they can park up front

when they are " in a hurry " . Yes, I have seen that happen!

During the warmer months, it's not so bad for me to get around...I'm

actually a lot more active until winter hits. Once it does, I go

from 33 to 93! This is the time of year when I could really use the

ability to park close. Especially on icy days. I fell on my right

shoulder a couple of years ago, and had to have it surgically

repaired. If I fall on it again, I'm done. My shoulder would not

be able to sustain another injury. Actually, several parts of my

body wouldn't be able to handle it!! I have a weak SI joint, and a

bulging disc that could get ugly in a fall too. When did I become

such a mess?!?!

You take care too!

Jen

[Guest guest]

Dear Mara, and those experiencing age discrimination:

Your words reminded me of my own experiences 30 years ago. At 23 I felt

like 83; at 33 I felt like 83; at 46 I felt like 86; just when I thought I

was finally catching up, at 56 I feel like 106. Can't seem to win.

Physicians who give us the line, " The pain's all in your head lady; get back

to work you'll be all right, " I consider them incompetent bigots. In 1988,

when I worked civil service, such a bigot refused to give me handicapped

access to my workplace. I filed an

EEO complaint and at the hearing I read my statement, addressing him as

" Mr. " instead of " Dr. " As I read what he told me ( " If you cause a fuss,

I'll test you and determine you unfit for duty. " ) I could see that he was

getting more and more steamed. Finally he blurted out, " I am a physician. "

The EEO representative looked at him and then back to me and simply said,

" Continue. " I had filed both handicapped and sex discrimination and won

both simply on the facts. Any physician who allows his personal bigotry to

affect the way he treats women is not a physician in my mind, and I'll leave

him and find someone else.

I am a service connected disabled veteran and the most bigotry I have seen

was in the VA. I fought them for 5 years to get a more accurate diagnostic

rating code. When I challenged them they cut me off. Five years later, my

last claim was 60 pages of discussion and 100 pieces of evidence. When they

came back with the same response they had 5 years before, it was obvious

that they were not reading my claim. I had the right to a hearing so I

called for one. When the VA people came in, I asked if any of them had read

my claim or looked at my file. None of them had. I then cited chapter and

verse of the regulation that they were violating. I then said that based on

their response to my claim they either did not read it, or they were

illiterate. Based on their violation of several regulations I felt that I

could not get a fair hearing and I walked out. The American Legion

Representative who came with me was impressed. When my appeal went to

Washington, D.C., I got my service connected status back, something almost

unheard of.

When fighting for our rights, I have found that sticking to the facts, and

showing where they have violated their own regulations was the most

effective.

I had also experienced people not seeing me as disabled. After singing with

a college IVCF group, I ended up spending 7 weeks in the VA hospital. One

of the guys in the group apologized to me, of not thinking that I was in

pain, simply because I did not have a cane, and because I was only 10 years

older than he was. When I came out of the VA hospital, I lived in a back

brace and fore-arm crutches. Since then, better pain management from

civilian groups has enabled me to get rid of the back brace and to graduate

from the crutches to a cane, which I continue to use when I'm outside.

Strangely enough, starting when I was around 42 y.o., both physicians and

people started to treat me differently, as if my age somehow gave more

credence to my pain problem? I have also found that using a cane gets me

the recognition I need in order to get around. (Although, some young people

still bump and push. Strangely enough, the only incident when I was told I

was too young was when a retina specialist told me I have macular

degeneration a few years ago, when I was 52 " You are too young for this! "

(MD is usually seen in people 60 years and older.)

It is often a fight to be recognized as having a pain problem, because it is

so subjective. And many of us still have to fight to be recognized as

having a valid pain problem. The next problem is to get adequate pain

management. Often we pay the price for those who do not have a pain problem

and are seeking drugs. We pay the price for their illegal actions.

I praise God that pain is now seen as an important vital sign. There are

more scientific studies about chronic pain and how to treat it. Physicians

who specialize in pain management are being more aggressive in treatment,

because of the damage that pain can cause in us. But we are just at the

beginning of getting more recognition. If only there was a valid test to

determine who was and who was not in pain. I figure if we don't continue to

see these incompetent bigots that they will go out of business and end up

working at Mcs. Just a dream that helps me deal.

Just my two cents,

Lois in PA