Author Topic: Getting family to accept and understand  (Read 4304 times)

kcoffiner

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Getting family to accept and understand
« on: May 14, 2008, 04:57:52 PM »
I have been struggling with Sjogrens for a yr now and my family is still in denial about my disease. Probably because I am serum negative (big whoop, means nothing). I know I have sjogrens and it is hard for me to express the pain and discomfort it causes. My family just feeds me antidepressants thinking they are suddenly going to make me happy. How can I be happy when I am in pain all the time. Sjogrens is unrelenting. I wish they understood and god help me have the symptoms for a day to see what life is like with the disease. Maybe then they wouldn't hound me so. I did get them to go to a support meeting some time ago but they dismissed it as women just complaining. Any ideas? Thank you.

Scottietottie

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Re: Getting family to accept and understand
« Reply #1 on: May 14, 2008, 05:25:43 PM »
 Hi kcoffiner  :)

Maybe you could print off some information from this site and ask them to read it. (They're not likely to read a book, but may read an article or a print off) You could even suggest they look at the site themselves.

I think it's really hard for people to understand what it feels like. Most of us don't look ill. The fatigue and aches and pains don't show. (I know this isn't the case with everyone but it is for many)

It's also just an 'unknown' disease even though millions of people have it. People have heard of MS and cancer but SjS just doesn't register.

Take care - Scottie
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

kcoffiner

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Re: Getting family to accept and understand
« Reply #2 on: May 14, 2008, 05:29:45 PM »
You got it--we don't look ill. even my eyes look "normal". I sometimes wish I looked as ill as a felt, then people may understand better.

lynnmarie219

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Re: Getting family to accept and understand
« Reply #3 on: May 14, 2008, 06:47:54 PM »
Would anyone be willing to go to a doctors appointment with you? Maybe this would be a way for them to realize its not all just you "being depressed" that a pill can take care of....if not.... Scottie's ides of reading some articles, books or even this site would be a great place for them to start with as well!

It's very hard and hurtful to deal with people we love when they don't seem to understand.....and sometimes they are in just in denial because they don't want to admit that someone they love is in pain especially for our parents. Just a thought.......its a slow process...but hopefully they will come around!



 

Tamik

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Re: Getting family to accept and understand
« Reply #4 on: May 14, 2008, 09:05:22 PM »
I was officially diagnosed about 3 years ago - positive serums and everything -and my family (husband -my extended family lives too far away) - still is in denial.  All except my 13 y.o. son who says he is going to be a rhemetologist and specialize in Sjogrens...:)  Wouldn't that be nice!!! Anyway, my way to deal with it was to accept Sjogrens myself, and realize that if others did or could not accept it, then it was their problem.  I know my bodies limitations and can only do so much.  When my husband gets upset about something trivial, I do not claim the problem - I let him own it. It is his problem if the dishes being dirty bothers him.  He can wash them or wait until tomorrow if they bother him that bad.  Over time, he has found that it does not change anything if he pressures me about things.  I do not get engaged in the argument.  I am not cold - it is what I have to do to live with Sjogren's.     I let it go.. I repeat that often.. LET IT GO!!!     Trying to live as stress free as I can... Tami K

genko_b

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Re: Getting family to accept and understand
« Reply #5 on: May 14, 2008, 10:15:28 PM »
My husband always says he wishes I would get purple spots or something when I'm feeling really bad so he could tell more easily. One of the problems is that we try to punch through and do things even when we are feeling bad, and then we pay for it afterwards. And sometimes when we are feeling better than usual we overdo as well, and then have to recover. So it is hard to pace ourselves in  a way that makes sense to other folks.

It takes time to figure out the best way to communicate with those around us about how we are feeling, and then things change and we have to figure it out all over again. The reality is that whether we have Sjogren's or not, our situation is always changing and requires adjustments.

Genko

Debora

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Re: Getting family to accept and understand
« Reply #6 on: May 17, 2008, 11:19:24 AM »
My family also didn't understand what was going on no matter how much I told them.  My ex finally went with me to ask the rhuemy what "really" was going on.  She told him the truth and told him that when I am in a flare that he really needs to be understanding and it isn't something I want or take advantage of.  I guess him hearing it from a specialist made him realize I wasn't making it up. 

He and my family and friends finally started realizing this when I would come down with a cold and get really sick (dark circles under the eyes and sunken in look), or I would get a major infection from the smallest or big cut, blood clots from surgery or IV's.  Unfortunately I would get to say "I told you so" and boy did I.   

Take Care
Debora

lynnmarie219

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Re: Getting family to accept and understand
« Reply #7 on: May 17, 2008, 11:26:21 AM »
Tami,

How wonderful that your 13 year old son said wants to be a rheumy and specialize in Sjogrens! He must "get it" when he sees what his mom goes through on a daily basis.....that is special! And for you and all of us as well....I hope he does!