The spoon story works sometimes to get people to understand. Its somewhere on the net. I no longer worry about what people think. Those who are near and dear understand and I don't care if the rest get it--save your energy and strength.

yeah but its the near and dear that dont get it. my friends i have 4 maybe 5 real friends. and i have three families. and my mom, dad, step and half sisters are the only ones who understand. my DNA dad, and the rest on that side, my in law family and my own husband they all dont get the hell of living with lupus and with the execption of my in-laws, i care what the rest think.... most of all my husband!

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

There is a link to the spoon story.

I have the similar problem, my husband does'nt get it at all, I have a neighbor that I can talk to who understands other wise I've given people pages off webmd and I've been told to take my husband with me to the doctors and maybe even some counseling to learn how to deal with helping other people understand your chronic illness. Once we get enough info out there more people will understand, that is what I've decided to do now, be an advocate for this and other diseases-I know I'm not lazy. I know I am in serious pain all night and cry and rock myself to sleep, maybe if enough people understood our lives they could empathize instead of just judge so my best advise is educate everyone around you.

I wish I had some amazing words of wisdom for you, but I know how you feel. Luckily, my mother has autoimmune so she understands, but my soon to be ex husband left me because of it, and never once bothered to even look up lupus or go with me to one doctor's visit. I don't think he believed me until I wound up in the ER with the Pulmonary Emboli, then he had the nerve to stand there and cry that I might die and he may have made a mistake cheating on me. Even the doctors didn't really diagnosis me properly until the lupus anticoagulant showed in my blood. But guess what I never cared what other thought, if I had a swollen joint I just went, got my prednisone, got my shot and kept on going. Find the one person or people, like here you can confide in and @#$% the rest! Judy

in this past year with my flair ups i tell people what i have. I have yet to find one person who knows what lupus is. Why are people so ignorant to this disease?

it took me a long time to learn this, and I went thru a lot of tears to get to this point, but I finally made peace with the fact that others just can't understand. they aren't going thru it so it's not possible.

we are blessed, though, if someone actually *tries* to understand and when we see this, we should hang onto them with all we've got.

then I realized also, that I really wouldn't want anyone to go thru the pain of lupus, so I'm glad they don't understand completely. it would be awful if they did.

sometimes showing them bloodwork that is off balance helps those who need something concrete. showing them your meds can also help make it real.

or when my dh would get the flu and ache all over, I'd kindly tell him "this is how I feel every day of the year, only maybe worse." that always does the trick.

hang in there, "this too shall pass."

thank you all. for the very helpfull things you've told me. its means alot to know that you all know what i'm going through and that we all support eachother. thanks again. ~Sarina*