Re: Friends (?) and Family Think I'm Faking

[Guest guest]

In a message dated 06/20/2001 3:54:41 AM Eastern Daylight Time,

bunky903@... writes:

<< It's other people among my

associates and family that think I am faking this and are calling me

a liar and a fake. >>

Hi Bunky - I had a conversation with my mother the other week and my brother

was present (he is an M.D.) I told her I was applying for a handicapped plate

and he asked " why?? " - so it's not just associates and friends, it's medical

people who don't know how much it hurts too - I can totally relate. I felt

like slapping him.

How to deal with it? Well, that's an individual choice I think - for me, I go

into detail about how much fun it is to try to get out of bed in the morning

and how lovely the treatments and drugs are which can be worse than the

disease. I also like to expound on how I will have this for life and

everyday feels like I have the flu and " no, it's not the same arthritis that

you, your grandmother, your aunt, etc. etc. have - tylenol DOESN'T do it for

me! " Anyway - as you can see, when someone thinks I'm " faking " , I lay it on

pretty thick. One good thing about that though, they don't ask how I'm doing

any more if they don't really want to know! LOL

[Guest guest]

Right now, I'm taking 400mg of Celebrex a day.. seems

to be doing an adequate job..

--- bunky903@... wrote:

> My psoriasis is mostly on my back and shoulders and

> so is hidden by

> my clothes. Much of it has gone away since I

> started taking MTX.

> The swelling in my joints comes and goes and the

> worst place is in my

> back which is invisible. My hands are so bad I

> can't drive. When my

> knees are swollen, stairs are a thrilling challenge.

>

>

> Has anyone else had this problem and how do you deal

> with it? I

> finally screamed " Do I have to get a doctor's

> certificate? " My

> employers and husband are cool with this. It's

> other people among my

> associates and family that think I am faking this

> and are calling me

> a liar and a fake.

>

> What do I say or do?

>

>

>

> Also I have been on Naproxen, Ibuprofen, and

> Sulindac which no longer

> work. What about the new Celebrex? or are there

> others?

>

>

>

__________________________________________________

[Guest guest]

I wonder how that compares to the 600 mg of Sulindac I was on and the

2400 mg of Ibuprofen I'm on now? I have a call into my doctor.

Thanks.

[Guest guest]

Thanks, .

I have stopped trying to " spare " people by saying I'm okay. I

honestly tell them how I feel.

Having an illness like this does sort out your real friends. We had

just met this couple shortly before we moved. I couldn't imagine how

I could physically do everything. They offered to help us...hardly

knowing us while long-time friends and family were too busy. Their

loving actions shamed a couple of our friends into helping. So

blessings come out of bad situations.

I have tried with my family and friends to be specific. I have found

that only people who are currently suffering with a similar situation

or are helping a family member with such have an empathic grasp of

your situation.

Bunky (whose family think she is a thorn in their side)

[Guest guest]

In a message dated 6/25/2001 7:56:19 PM Eastern Daylight Time,

bunky903@... writes:

<< I have found

that only people who are currently suffering with a similar situation

or are helping a family member with such have an empathic grasp of

your situation. >>

I agree Bunky - I think that so many people take their good health for

granted that they can't even begin to realize what it is like to have the

first thing every day and in every situation be about how you are feeling

that day. I cancelled a trip this weekend because the friend we were going

to see didn't have room for us in her house to stay but offered her dad's

Winnebago. I was so nervous about how I could function in it that I

cancelled. I was afraid I wouldn't be able to step up into it, or that I

wouldn't be comfortable in a small bathroom or small bed. I know my husband

was disappointed that we didn't go, but I just couldn't bring myself to be

comfortable enough to do it. I know that someone without PA or some other

chronic debilitating disease could never relate to this. I only hope that

our friends don't stop asking us to socialize because I've had to cancel so

often.

[Guest guest]

<< I have found that only people who are currently suffering with a similar

situation or are helping a family member with such have an empathic grasp

of your situation. >>

I agree Bunky - I think that so many people take their good health for

granted that they can't even begin to realize what it is like to have the

first thing every day and in every situation be about how you are feeling

that day.

Sometimes I think that others think I'm faking and I have stopped talking

about my health when I'm out. People at work know the situation and I have

no problem there. But I've attended several events over the last few months

that I just got up and went for a walk from or just plain left. I got sick

and tired of people asking me how I was only to feel a total lack of

understanding was evident in the boredom on their faces. Some of the most

irritating reactions I've had was " can't you just take aspirin? " , or (after

finding out I'm on MTX - " I'd rather put up with a few little aches and

pains than take something like that " (one even said she'd rather be dead).

Other favorites include 'kind words of advice' - like " you just need to

change your diet " (don't eat anything) and " have you thought of aerobics? " .

What's the use? In actual fact, the more thought I've given to this, the

more I've realized that my silence is starting put some people in their

place. It's amazing the impact you have on people when you just get up and

walk out. They CLEARLY understand that the reason I don't talk about it

anymore is because I am not interested in their comments and they know darn

well that when I respond with " I'm great " - that I'm being as sarcastic as

all get up. ly, I'm starting to enjoy my privacy more and more.

, your fear of your friend's Winnebago reminded me of a situation I was

in a few years ago. I went on a business/shopping trip with a friend and

she piled up her van so much with her shopping that there was barely a place

to sit for our five hour journey home, let alone sleep in if we missed one

of our ferries that night. I didn't have the psoriatic arthritis then (or

at least I wasn't diagnosed yet) but my fibromyalgia was quite bad. I

explained to her that there was no way I could sleep like that and her

response was " can't you just curl up on the seat? " . Last time I ever went

somewhere with her!! Fortunately, we made our ferry and I had my own bed

to sleep in.

[Guest guest]

Thanks for answering, . Isn't that what empathy is, your pain

in my heart. I understand your fears. My husband and I booked

ourselves into a nice hotel room rather than stay with family because

it is easier to control the room and the facilities. I had a nice

hot tub to use which helps immensely. Guest rooms tend to be

whatever is leftover but hotels are trying to make money so offer

better beds, bathrooms designed for the disabled, etc. They are

offended, of course, because they haven't accepted that my illness is

real. In a hotel room I can set my own schedule based on my

limitations of the moment.

Just be as upfront and kind with your family and friends about why

you have to make these choices. That is what I am trying to do. I

don't expect a group of people to all make adjustments though. My

husband has been great though. I appreciate your sharing with me. I

don't feel so weird and alone.

Bunky

> In a message dated 6/25/2001 7:56:19 PM Eastern Daylight Time,

> bunky903@h... writes:

>

> << I have found

> that only people who are currently suffering with a similar

situation

> or are helping a family member with such have an empathic grasp of

> your situation. >>

> I agree Bunky - I think that so many people take their good health

for

> granted that they can't even begin to realize what it is like to

have the

> first thing every day and in every situation be about how you are

feeling

> that day. I cancelled a trip this weekend because the friend we

were going

> to see didn't have room for us in her house to stay but offered her

dad's

> Winnebago. I was so nervous about how I could function in it that

I

> cancelled. I was afraid I wouldn't be able to step up into it, or

that I

> wouldn't be comfortable in a small bathroom or small bed. I know

my husband

> was disappointed that we didn't go, but I just couldn't bring

myself to be

> comfortable enough to do it. I know that someone without PA or

some other

> chronic debilitating disease could never relate to this. I only

hope that

> our friends don't stop asking us to socialize because I've had to

cancel so

> often.

>

[Guest guest]

Hi .

Thanks for your comments. I wonder if people are just obtuse about

PA or are just obtuse about all illnesses that are disabling. It is

just that PA is " invisible " ? There should be some sort of deformity

that could prove we have it. Sometimes though people are just self-

centered in general and not thinking of others.

Those are some comments too that others made. Yesterday people who

know I have PA and I have already explained in detail what it is and

what it does, asked " How are you? " I just said, just like I was when

I last explained it to you, only worse. Oh, that's right. See it is

not important to them...only when someone shares that pain do their

eyes start to focus on more than themselves. I feel like handing out

a pamphlet every time someone asks. I have resorted to saying " I'm

in extreme pain, my medication makes me extremely nauseated, I can't

doing anything physical that matters to me, but besides that I'm

fine. How are you? "

So thanks for helping, .

Bunky

> << I have found that only people who are currently suffering

with a similar

> situation or are helping a family member with such have an

empathic grasp

> of your situation. >>

> I agree Bunky - I think that so many people take their good

health for

> granted that they can't even begin to realize what it is like

to have the

> first thing every day and in every situation be about how you

are feeling

> that day.

>

>

>

> Sometimes I think that others think I'm faking and I have stopped

talking

> about my health when I'm out. People at work know the situation

and I have

> no problem there. But I've attended several events over the last

few months

> that I just got up and went for a walk from or just plain left. I

got sick

> and tired of people asking me how I was only to feel a total lack of

> understanding was evident in the boredom on their faces. Some of

the most

> irritating reactions I've had was " can't you just take aspirin? " ,

or (after

> finding out I'm on MTX - " I'd rather put up with a few little aches

and

> pains than take something like that " (one even said she'd rather be

dead).

> Other favorites include 'kind words of advice' - like " you just

need to

> change your diet " (don't eat anything) and " have you thought of

aerobics? " .

>

> What's the use? In actual fact, the more thought I've given to

this, the

> more I've realized that my silence is starting put some people in

their

> place. It's amazing the impact you have on people when you just

get up and

> walk out. They CLEARLY understand that the reason I don't talk

about it

> anymore is because I am not interested in their comments and they

know darn

> well that when I respond with " I'm great " - that I'm being as

sarcastic as

> all get up. ly, I'm starting to enjoy my privacy more and

more.

>

> , your fear of your friend's Winnebago reminded me of a

situation I was

> in a few years ago. I went on a business/shopping trip with a

friend and

> she piled up her van so much with her shopping that there was

barely a place

> to sit for our five hour journey home, let alone sleep in if we

missed one

> of our ferries that night. I didn't have the psoriatic arthritis

then (or

> at least I wasn't diagnosed yet) but my fibromyalgia was quite

bad. I

> explained to her that there was no way I could sleep like that and

her

> response was " can't you just curl up on the seat? " . Last time I

ever went

> somewhere with her!! Fortunately, we made our ferry and I had

my own bed

> to sleep in.

>

>