? dealing with friends and family

hi jack. family and friends are not as sympathetic as they should be, because to them, you appear “normal”. they don’t feel what you feel (or don’t feel). they don’t know the weakness and fatigue you battle every day. and they don’t feel your pain you try to hide. let them walk in your shoes for just (1) hour and family and friends would look at you as a hero for finding the will to fight this god awful illness and live with it day in and day out. i have printed out many of these posts to make people understand what i’m going through. they seem to understand it a little better now. maybe search through this site a bit and find a post or two that relates to you and read some of them to your relatives and such. they’ll get a better grip on your illness. the one thing you can count on is us gbs’ers on this site. we really do know how you feel. we feel it too. feel free to vent to us anytime and get out your frustrations about others not understanding the severity of your illness. that’s what we’re here for. stay well.
deb

Hi Jack, welcome to the Family. I wish there was an easy way of getting the message through to family, friends and so on, but there isn’t. you need to stick to your guns, not do things for others like you might have done before. don’t over do things and just put yourself first and foremost. rest when you need to and have a good time when you want to. i’ve been dealing with acute gbs relapsing/remitting type since 8/05 and am still not getting the support/help i need from my hubby, his family or my kids(sometimes). although i must say my kids are better then my in-laws and hubby. my parents and siblings are wonderful, very supportive and much appreciated. so when i find the answer to your question i’ll be sure to let you know the secret code.:) take care-gotta go walk the mall with my parents now.:)

Jack,

Deb hit the nail on the head. We apprear to be ‘normal’, so how could we possibly be ill. The fatigue is so hard to explain, and I hate thinking that my husband and children feel that I am lazy.

Go to [COLOR=darkred]www . angelfire.com/home/gbs/aftergbs. html[/COLOR] also [COLOR=darkred]www . angelfire.com/home/gbs/residual. html[/COLOR] and [COLOR=darkred]www . angelfire.com/home/gbs/index. html[/COLOR] (we arent allowed links on the site, so if you copy, paste and remove the spaces it will get you onto the link)

I hate printing out and giving my husband articles, it feels like im trying to ‘justify’ my laziness and pain. But my parents read these articles and a light bulb went off for them.

Welcome to the forum!

[SIZE=2]Hello Jack,

I have been dealing with this for about a year and a half now and I know what you mean that friends and Family can be hard to deal with. I think that they sometimes look at us and don’t see anything wrong on the outside so they assume we are fine or they just don’t want to accept it. I know some of my family members saw that I had a very hard time walking but they still acted like nothing was wrong. I have now limit the people that I speak to about my illness because they can sometimes make you feel worse. I have found that this forum is a great place to get support and you find people that understand you! Maybe you could even have some of your family members read other peoples postings and they can see that it is not just you. I know I tell my family about different ones on the forum and that sometimes help them understand me. I would also just keep reminding them becsue they forget because we look normal to them, they have NO clue how we feel. :confused:
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my heart aches for you. i don’t know what i would have done without the support of my husband and parents. when i first got home from the hospital, my husband and i moved in with my parents for about five weeks. my dad was on disability battling cancer (he has since passed away) and he took care of me while my mother and husband went back to work. my husband and mother took turns bathing me and dressing me. my husband certainly went over and beyond the call of marital duty. he fed me, bathed me, dressed me and even dealt with “that time of the month” for me. (i have since had a hysterectomy), but the point is; i’d like to slap both of your husbands upside their heads to knock some sense into them.
LAZY??? HOW DARE THEY THINK YOU’RE LAZY!!!!!!!!!! i KNOW the fatigue you’re going through. it’s unbearable, overwhelming and down right impossible to function. i wonder what they’d expect from you if the tables were turned. well, time to get off this soapbox. my heart goes out to all of you who don’t have the support from your families as i did.
love to all and stay well,
deb

Deb,

Thank you so much for that! I dont want to speak for Cheryl, but I’m sure has a lump in her throat like me 😮 .

I really didnt mean to complain about my husband, I think he tries to understand, but I guess it is hard for him to do that. He met me after the event, but is having to deal with the recurrence of ‘Post GBS’ symptoms so many years down the line. My parents are wonderful however, but I think that is just usually the way it is with parents 😀 , They live so far away (17 hours by air 😮 ), I just wish I could see them more often so that I could be their ‘little girl’, and hug them more often when I’m feeling down.

[QUOTE=jack]I’m relatively new, to the site i mean. GBS I’ve been dealing with for about a year now. I’ve finally found a daily routine that works for me. I’m sure you all know the tirednes, and the tingly sensations that seem to be a common theme for everyone. What I really wanted to ask everyone, is how to explain to others what I’m going through with this? I mean like family members and succ, they sometimes don’t seem to understand or for that matter care! so if you could please give some advise on that subject. thanks[/QUOTE]
Hi Jack,

We went through the same thing when Frank was sick and he had GBS/CIDP for 6 years. We got tired of trying to explain GBS, so we started to tell family and friends that GBS/CIDP is a cousin illness to MS, seems like everyone knows what Multiple Sclerosis is but not GBS.

The stupid things that family and friends would say became so unnerving at times that I wanted to shoot all of them.