Lilykat

I give them the medical definition first, add that Lupus is not, I repeat NOT contagious. Then I share my own symptoms. Sometimes it does get a bit frustrating, but I look at it as an opportunity to share important knowledge with a part of the population that was ignorant of Lupus before they met me.  Think of it as a mission in life. All of us. We're going to teach the world what Lupus is, who we are, and that our disease matters dammit.

22 months ago

Ethel

I agree with Lilykat, but must admit that on some days I really don't want to have to explain. I have the rash on my face also and have gotten a lot of questions about it and funny looks from people also. After 17 months with this crap on my face, it is finally healing up but now I am beginning to see the scars that will be left behind.

22 months ago

Dawn

I start by saying, "I have Lupus.  Basically my body attacks itself instead of germs and bacteria."  Once they kind of feel sorry for you they realize how stupid they sound.  I know it's difficult, but hopefully they will think twice before they say something stupid to someone else.  Just remember you're educating people and making life a little easier for the next person.  Sorry we have to be the one's to do that :(  Feel better!

22 months ago

Margie Lee

It is hard to explain, especially when you are having a bad day and the person looks at you and says "you don't look sick."  I may not look sick, but I don't feel like doing anything. I don't even have the energy to breathe sometimes.  People do ask me about my rash, but I can handle that pretty well. I hate it when people apologize. For some reason, it gets on my nerves when they look at me and say "I'm sorry."  I feel like saying "why? you haven't done anything to me. It is just part of my life."  I don't know why, but I hate for people to feel sorry for me and I can not stand it when people rub on me. I just want to be left alone when I don't feel well or if I am having a bad day. I don't know how to tell people this because I don't want to hurt anyone's feelings.
It is an illness that is so hard to explain and it is tiring. I have some friends who understand it and know me well enough to know if it is acting up and I love them and thank God for them. It is nice to have people like that around.

20 months ago

Margie Lee

I must have been having a bad day when I posted my reply. I sound really b*tchy. sorry about that. Lupus is difficult enough for us to  understand. I don't know how to tell you to explain it to others, especially when there are days when I wish someone would explain it to me. As I said, once you have come to terms with it and see the support around you, you will find it easier (it will never be completely gone, this need to explain). If you have friends like mine, you will have more support than you know what to do with. I have to give a shout out to my friend Steve West.  He was the one I was speaking of mostly when I said that he understood it and knew me well enough to know when I am not well. I am the same way with him and thank God for him on a daily basis. I think that is the one thing we all do need (save explanations)...a good system of support and love.

19 months ago

sarah

i agree with all the posts.. i hate when people say they are sorry im sick.. yea so am i but what the heck is apologizing going to do? i tell people my immune system has ADD and instead of attacking germs like its suppota it gets over excited and attacks everything and that makes me sick.. and the "well you dont look sick to me you look fine" REALLY upsets me and my response is "yea well you dont look dumb but you apparently are.."

12 months ago

Viv

Does anyone ever come across people who don't seem to believe them? I find people(esp. young adults? that question if I am exaggerating my tiredness just to get out of things.

6 months ago

Jordan

People always ask me why I'm limping when I walk. I hate it so much because I really don't want to explain to everybody that I'm sick.

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