Re: Family support? (long post)

[Guest guest]

Hi :

This is a very common theme here. We have an invisible

illness, no one else can see our pain, and there are

often no obvious physical problems to identify us as

people in pain. I have been dx now with RA for 7

years and I think at times my family still does not

totally get it - they are really pretty understanding

and do help when I ask for it, but, still, they will

never understand like we do, and I would never want

them to.

Last week, I was trying to pour out a big pot of

boiling water and pasta into the drainer in the sink.

My right grip weakened and I dropped the pot, with the

water and pasta being poured over the top of my right

hand. Second degree burns. Now that pain was

something my family could see! No need to explain

that it hurt, that healing will take time, and I will

be scarred from it. They get that kind of pain, that

injury they can see. RA pain is not that easy to

explain, even though that pain is very real and will

be with me for the rest of my life. The scars are

inside, and not visable, but are no less real than the

scars from my burn will be.

When I was first dx, I would find articles about RA on

the internet, information, etc., and email it to my

husband. Somehow it was easier for him to read about

RA, rather than my sitting and talking to him about

it.

I also got books from the library, left them out in

full view for my hubby or kids to check out if they

felt like it, and read some of the big points about RA

outloud too - in small bits - to whomever was sitting

by me. Have you thought of taking them to the doctor

with you? Also, this is not fixable and men like to

fix things - my hubby and son understand as best as

they can, but emotionally I still connect better with

my daughter, who at times seems like she can feel my

pain herself. She has learned to read my face and

body language, and knows when I am having a bad day

without my having to say a thing.

I know how hard it is to feel alone in your pain,

trapped within your new reality, and wishing it all

could just go away. I am sure that your family knows

that it is not all in your head, but maybe they are

afraid of what will happen to you, what will your

future be, all those things that you are asking

yourself, and if they just don't acknowledge it, it

will all go away.

My kids and hubby were scared, for me, for the family,

everybody's future has been altered in different ways

by my having RA. I had to stop working, down to one

income, and that has been hard on my husband, and on

my self-esteem. My kids were 15 and 13 and they

thought it meant I was going to die. My grandmother

had RA and was cripped by it, I thought that was my

future. It threw us all for a loop, but we got through

it. You and your family will too.

I am sorry that you are not getting the emotional

support you need, but know that we are always here,

and do understand. Just give your family some time to

get adjusted, maybe do some of the things I mentioned,

and I hope that they become more supportive of you as

time goes by. I hope this helps in some way.

Kathe in CA

--- monica_p4 <monica_p4@...> wrote:

> I'm having trouble with getting emotional support

> from my family. I was wondering if

> anyone else has had problems with friends or family

> members who won't believe that

> there is really something wrong with you. My family

> if sure that if I just put a little effort

> into it got up off the couch stopped whining and

> made some goal I could stick to I'd be

> better instantantly. Because of course my problems

> are all in my head. If any one has

> gone though this and has any advice about how to

> reach my relatives, and how to teach

> them more about RA I would be most greatful.

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