Re: Families who understand/don't understand

[Guest guest]

Sharon,

The guy sounds like a real creep and you might be better off without

him in the long run (just my personal opinion). How about getting him

to have a discussion with your doctor about it, or take him to

somewhere that he can meet people who are in a wheelchair because of

this disease, or even have him read some of the messages on this

forum. He needs to be educated, and he needs it badly.

I sometimes wish that just for 24 hours we could trade our conditions

with those skeptics who think it's all in our heads. Last Monday I

emailed in to work that I was in too much pain to come into work that

day and that I could barely move and was going to take a Vicodin and

go back to bed. My supervisor had no problem with it, but I sometimes

get the impression from some of my co-workers that they think I'm

faking it. Just ONCE, I'd like them to experience what I go through

at times. Also, they seem to think that I should be able

to " schedule " my joint pain - LOL! It happens when it happens whether

it's convenient for others or not, and some of them don't seem to

understand that I have no control over when it happens.

The fact that the pain is internal is one of the most infernal things

about this disease. Too bad there isn't a " pain meter " that could

objectively measure it, and least then we would have some outward

evidence to present.

Good for you for putting your foot down. Don't take any crap from him

or anyone else. You've got enough problems without letting others

make your problems worse! Please excuse my ranting, but this kind of

thing just PO's me something terrible!

And many thanks to all those who DO understand and have some empathy

for others who suffer with this and other diseases. Let them know

their understanding is appreciated and consider yourself lucky to

have a spouse/partner who is considerate if you're lucky enough to be

in that situation (unlike Sharon's unfortunate situation). The good

ones should be treasured.

-- Ron

> I know what you all mean by your families not

> understanding. Because I don't have skin lesions but

> do have joint pain, my husband especially (whom I have

> begun to expect is a manic/depressive)does not

> understand. Sometimes he is supportive (when he seems

> manic) and sometimes he is not (when he seems

> depressive). About a year ago he walked in the house

> and I was having an especially painful, fatigued day

> and he asked what was wrong. I said I hurt soooo bad.

> He got upset and said if he had to hear me complain

> about hurting one more time he thought he would leave.

> Hurt my feelings really bad, but since then I have

> not said out loud that I hurt or feel bad again. One

> time he asked how I was feeling and I said " you don't

> want to know...remember? " He has been more supportive

> since then. He sometimes tries to get me to do things

> that I know I cannot do..like get on my knees in the

> flower beds (used to do this easily)and carry things

> that are too heavy for my poor finger joints to have

> to carry. I " bow up " at him and tell him to get out

> of my face and that I would not wish this disease on

> my worst enemy...but he is pushing it. He backs off

> real quick. LOL. I cannot do housework like I used

> to. I manage to pick up and do dishes, cook and do

> the washing; but mopping, stooping, squatting to pick

> stuff up or get spills up are a thing of the past. I

> hire my DIL to do it for me every week. He does not

> complain. He really isn't as bad as he sounds... just

> this one area. I am printing off some of the emails

> from ya'll about being supportive and all the info I

> can find about this disease...so he will be better

> informed. Sometimes people react negatively because

> of ignorance.

>

> __________________________________________________

>

[Guest guest]

Im sorry, this may be out of line, but your husbands seem like they both need

HUGE attitude adjustments. I dont have PA but my husband does, and I can feel

his pain sometimes. Nobody WANTS to be in pain. I couldnt imagine in a

million years belittling him because of something like that. I think your

husbands at least need some counceling. OR maybe a firing squad.....

Just my opinion.

HAPPY HOLIDAYS!!!

ELLIE

[Guest guest]

I assume your name is Sharon, after reading your letter twice I had

to respond... I know how you feel, I suspect we all (PAer's) know how

you feel. PA is a permanant part of our lives, we think about it

everyday because we must in order to deal with it and do what is best

for our minds and our spirits. I am sad to feel that my husband

resents my disease and all the other problems I have, he hasn't

outright said so... but it is a fact that I have finally accepted.

Friends and family always have told me to 'just be honest and tell

him how you feel'... yea, right. He has his moments when he is very

concerned, usually when I feel so bad I'd rather be in the emergency

room... but mostly I try to 'appear' okay (otherwise I get the 'can't

you at least look healthy' look and not make others feel bad for me,

or that his wife is not healthy... poor guy...). I usually put so

much effort into trying not to limp when my foot is killing me,

clenching my jaw when my ribs,collar bone,and shoulder are so

unbearably painful to where I can hardly sit still while 'out'

socializing,etc., trying hard to smile when I feel like throwing

up... but don't want anyone to feel bad... well, I AM FEELING

BAD !!!! I am sick of feeling guilty about feeling sick... it is not

my fault and I am tired of having to 'pretend' it all away. Then,

add migraines... heaven forbid my migraine is more painful than his

headache... I didn't realize it was a contest in pain... he can win

as far as I am concerned ! I'll even get him a trophy. I never

wanted to be sick, at least his colds can go away... a cold for me

turns into bronchitis and pneumonia ! I always tell myself I have a

wonderful husband (he's a great dad...), but I wonder how many of you

get 'real' support and understanding from your wives and husbands. I

feel as if my husband has given up on supporting me as he

has 'possibly' begun to realize that PA is not temporary, it can't be

fixed at the moment... and may not be curable in my lifetime. So, do

I silently suffer alone, insist he understand how I feel, just keep

going as is...? I guess there are no 'set' answers, we all have

different lives, lifestyles, and circumstances... but at least I was

able to get this off my chest... I would love to be back to

my 'normal' self and do all the things I use to do, but I can't and

that is frustrating enough... can't play my clarinet,sew,piano, lots

of housework that I actually use to enjoy, etc. Plus, I would love

to have my energy back, I want to walk and do yoga again, but I am

not quite ready to go back to them yet...joints are still too

inflamed. Thanks for being there, I love this site, others who

understand make PA much easier to handle and cope with. #2

-- In @y..., Sharon Hanna <nanasewpretty@y...>

wrote:

> I know what you all mean by your families not

> understanding. Because I don't have skin lesions but

> do have joint pain, my husband especially (whom I have

> begun to expect is a manic/depressive)does not

> understand. Sometimes he is supportive (when he seems

> manic) and sometimes he is not (when he seems

> depressive). About a year ago he walked in the house

> and I was having an especially painful, fatigued day

> and he asked what was wrong. I said I hurt soooo bad.

> He got upset and said if he had to hear me complain

> about hurting one more time he thought he would leave.

> Hurt my feelings really bad, but since then I have

> not said out loud that I hurt or feel bad again. One

> time he asked how I was feeling and I said " you don't

> want to know...remember? " He has been more supportive

> since then. He sometimes tries to get me to do things

> that I know I cannot do..like get on my knees in the

> flower beds (used to do this easily)and carry things

> that are too heavy for my poor finger joints to have

> to carry. I " bow up " at him and tell him to get out

> of my face and that I would not wish this disease on

> my worst enemy...but he is pushing it. He backs off

> real quick. LOL. I cannot do housework like I used

> to. I manage to pick up and do dishes, cook and do

> the washing; but mopping, stooping, squatting to pick

> stuff up or get spills up are a thing of the past. I

> hire my DIL to do it for me every week. He does not

> complain. He really isn't as bad as he sounds... just

> this one area. I am printing off some of the emails

> from ya'll about being supportive and all the info I

> can find about this disease...so he will be better

> informed. Sometimes people react negatively because

> of ignorance.

>

> __________________________________________________

>

[Guest guest]

Hi -- I don't know about all husbands, but I do know that at least some of

them (my ex included) get impatient with chronic ailments. His reaction made me

feel like a total failure most of the time -- too old, too slow of foot, too

unhealthy, and on ad infinitum. When I told him how I felt, he acted stunned --

never realized he made me feel

that way. Anyway, he eventually looked for younger, greener pastures and now I'm

living with my sister and happier than I had been in years. I don't have to

pretend with her or force myself to do things that I feel are unhealthy for my

body. Such a relief! Anyway, maybe if you tell your husband how his reaction to

your illness makes you feel, he

will try to be more understanding. That is always a hope, and for some a

possibility. I hope your holidays are peaceful and pain-free and that next year

you will be feeling better than ever. That is my wish for everyone on this list.

-- Jan O', Alaska

[Guest guest]

Amen to that! -- Jan O', Alaska

ron_s_dotson wrote:

> Sharon,

>

> The guy sounds like a real

[Guest guest]

I was so touched by the letters from those who are lacking in family support

that I simply had to respond. My heart really goes out to you. I am a

widow, but was, fortunately, married to a very caring and considerate man

whom I miss greatly. My children and grandchildren are incredibly

solicitous of my constant pain and I simply don't know how I would deal with

anything else. I try to do my best on my better days (which are becoming

fewer and farther between as time goes on) because they do care so much that

I don't want to burden them any more than I have to. But, on my worst days,

they are sooo there for me, doing anything they can to help. I feel very

sorry for those who can't understand and accept; what seriously shallow and

unfeeling people they must be. I will keep you in my prayers.

---

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[Guest guest]

Thank you Ron, Jan, Debbie and others for the kind

words and for jumping to my defense! I appreciate it.

I do know that my husband tells other people about my

illness, because I see them and they always say " Bill

said you were having some serious problems with

arthritis,...how are you doing? " etc. Makes me

wonder if he is telling others to get sympathy for

himself or for me. Most of the time, he does not

bother me...I just ignore him and ..to be fair..I must

say that he is not always unsympathetic..especially

since I am feeling a little better with the new meds.

I really do think he has manic/depression and the

older he gets the worse it gets. He has an uncle with

that and he reminds me more and more of that uncle.

Anyway, I appreciate ya'll making me feel better about

myself!

Sharon

[Guest guest]

I just have to write a brief message to all the responses on this

topic (and prayers sent, thanks), but my husband just peered over at

the screen and read some of these messages and got quite upset with

me... he thinks he is understanding and that I am not thinking

straight or seeing things for the way they are. You see, my feelings

are still not acknowledged by him... I lose no matter what. This is

so hard to deal with on top of just having all the problems of

suffering with PA... I am so glad to have found this site, but sad

that you all are basically my true support in understanding... as

well as my dad and siblings... I can feel their concern, but then my

husband (poor guy) has to live with me 24/7... that must be more

overwhelming. Thanks again. #2

[Guest guest]

In a message dated 12/20/2001 7:45:18 PM Eastern Standard Time,

ranoush84@... writes:

> he thinks he is understanding and that I am not thinking

> straight or seeing things for the way they are. You see, my feelings

> are still not acknowledged by him... I lose no matter what.

2 - Can you show him the emails and ask him rather than being upset to

really read what is being said? Like I said before, men tend to be problem

solvers, and he wants to fix you. But that's not what you need! You need

him to acknowledge your feelings (just like you said) and to just listen and

let you vent. He doesn't need to fix this problem - it has no fix really.

He needs to listen and validate your feelings. Maybe you can try to explain

to him that that's all you want. You don't need a fix, you just need a place

where it is safe to cry, scream, vent, rant, whatever makes it feel better

and then just have him say " It's ok, I understand "

[Guest guest]

Thank you sooooooooooooooo much, just saying what you did in your

message made me feel 'validated'. It is amazing what just a few

words from ' someone I haven't even met' can do, I will follow your

advice. We all understand each other (PAer's), but sometimes we

forget the obvious and just need advice to push us in the right

direction. You described how I feel exactly ! Thanks again. #2-

(p.s.--- I am obviously having a good day today :0)............

-- In @y..., TADEL630@a... wrote:

> In a message dated 12/20/2001 7:45:18 PM Eastern Standard Time,

> ranoush84@y... writes:

>

>

> > he thinks he is understanding and that I am not thinking

> > straight or seeing things for the way they are. You see, my

feelings

> > are still not acknowledged by him... I lose no matter what.

>

> 2 - Can you show him the emails and ask him rather than being

upset to

> really read what is being said? Like I said before, men tend to be

problem

> solvers, and he wants to fix you. But that's not what you need!

You need

> him to acknowledge your feelings (just like you said) and to just

listen and

> let you vent. He doesn't need to fix this problem - it has no fix

really.

> He needs to listen and validate your feelings. Maybe you can try

to explain

> to him that that's all you want. You don't need a fix, you just

need a place

> where it is safe to cry, scream, vent, rant, whatever makes it feel

better

> and then just have him say " It's ok, I understand "

>

>

>

[Guest guest]

,

Sorry you have to deal with this situation. My parents were like

that, and sometimes still are. They pretty much have to be hit over

the head with the same diseases or situations as someone else in

order to believe that other people can actually be different from

them.

No matter how much I try to ignore their comments, or consider the

source, at times their insensitive comments roll around in my head

and I get my dander up.

Luckily, my hubby and kids bend over backwards for me to help me

out. And this site has also been very helpful. I'm truly blessed.

But as for my parents, I've learned in their situation that feelings

were not allowed to be demonstrated in their families when they grew

up. It seems tolerance is a learned behaviour. And I do believe

dealing with other people's feelings can be overwhelming for some,

especially those with control issues.

I'm glad you have found support here. Happy holidays and best wishes

for a healthy new year.

-Diane

I am not thinking straight or seeing things for the way they are.

You see, my feelings

> are still not acknowledged by him... I lose no matter what. This

is

> so hard to deal with on top of just having all the problems of

> suffering with PA... I am so glad to have found this site, but sad

> that you all are basically my true support in understanding... as

> well as my dad and siblings... I can feel their concern, but then

my

> husband (poor guy) has to live with me 24/7... that must be more

> overwhelming. Thanks again. #2

[Guest guest]

In a message dated 12/20/01 2:09:00 PM Central Standard Time,

jdixon03@... writes:

> I feel very

> sorry for those who can't understand and accept; what seriously shallow and

> unfeeling people they must be.

I don't respond much anymore because I rarely get a chance to go into my

email. But I just wanted to say D I T T O!!!!!!!!!! Your life is a mirror of

mine. And for us life is good even with each and every pain because our

families do understand. Have a really good New Year!

Chicagoland Sharon

[Guest guest]

-My advice to all who want families to understand especially spouses,

Make them read articles and websites and any notes from the doctors,

When you wake up with muscle spasms or pain, don't be afraid to let

them see you cry. Sometimes, my husband comes home and I am standing

at the stove with tears running down my cheeks, but I HAVE to do it

so I do. He knows that I am adjusting and has stopped asking " dumb "

questions and " are you sick AGAIN? " , and now seems to sense when I

want to be left alone and when I really need help. They can't see

this disease they have to learn the same way we do- research. Every

time I go to the dr. my hubby gets homework to read. When he gets a

the doctor's note that says not to lift over 10 lbs then he can't

complain as much. On those now rare occasions when he " forgets " I

quickly explain, " well, if you don't mind me in a wheelchair by 50,

and then YOU'LL have to do it all... " Smartens him right up.

I hope all will have success in this area. A

-- In @y..., momscmbc@a... wrote:

> In a message dated 12/20/01 2:09:00 PM Central Standard Time,

> jdixon03@t... writes:

>

>

> > I feel very

> > sorry for those who can't understand and accept; what seriously

shallow and

> > unfeeling people they must be.

>

> I don't respond much anymore because I rarely get a chance to go

into my

> email. But I just wanted to say D I T T O!!!!!!!!!! Your life is a

mirror of

> mine. And for us life is good even with each and every pain

because our

> families do understand. Have a really good New Year!

>

> Chicagoland Sharon

>

>

>

>

[Guest guest]

In a message dated 01/02/2002 2:53:11 PM Eastern Standard Time,

ihvkids@... writes:

> Sometimes, my husband comes home and I am standing

> at the stove with tears running down my cheeks, but I HAVE to do it

> so I do.

- No you don't!! I know we all feel we have certain household duties

that we HAVE to do - cook, clean, laundry, etc. etc. I understand if you

have kids that it's probably true there are some things you HAVE to do, but

sometimes cereal and milk is the perfect dinner, and sometimes your house

doesn't have to be spotless (hey, dirt will help those kids build up

immunities!), and when you feel ok, shop for about 14 pairs of underwear each

(or teach them all how to do laundry). My point is, sometimes we have to

lower our standards to save our health.

Take care, and find a good, cheap takeout restaurant!

[Guest guest]

---, thanks for your thoughts. when i say i HAVE to do it I mean

that because yes, I have three little kids and I REFUSE to put my

life on hold. I am stronger than my body wants to think I am and I am

not even thirty yet!!! But, I know when I need to take it easy and my

husband is very understanding and tries not to scowl at the mess when

he walks in. Unfortunately sometimes no one else will do it, so as a

mom, I do have to care for my kids first. they are still very young.

A