I don't mean for the title to be conceited. I'm not. I'm actually rather insecure about my looks. HOWEVER, Lupus, as you all know, is an "invisible" disease. Sure we can get the rash and such, but overall, it doesn't really alter our appearance much. We look "normal". Sure we may limp, move slower than others, use assistive devices but face it- we make lupus look good!
I have a handicap parking card. Most of the time I don't get noticed. There have been a few times when the "bluecard police" as I call them have rudely commented. My response is usually "I make lupus look damn good don't I!" Shuts them down everytime! Once in awhile I'll comment "I'm not handicapped? Would you PLEASE tell my doctor? I've tried to tell her for years and she refuses to believe me". Enter dumfounded look in response here.
Often times society quickly judges us by our appearance and if we don't look sick (whatever that means), then obviously we are NOT sick. And if we are sick, then what on earth are we doing out and about? Helloooooo, life goes on and stuff has to get done...
"I'm going to get healthy or die trying"
I love your response to the handicap police, i'm going to have to steal that. Usually I tell people to its none of their business and if they are still being prissy threatening to call the real police I just tell them "go ahead but for now i'm going to go inside please find me so I can see your face and laugh when you are proven wrong".
Up in Georgia I got the looks, down here it's so common place with all the elderly. No one questions
when I am explaining to friends or close associates .... I like to say "I am sick on the inside" "my body thinks I am a germ, and worth killing". when I speak to strangers I have started using the comment " you try taking chemo tablets every day ..... and then tell me i'm not sick" both have the desired reaction. it stops them dead in there tracks, and often I get appologies also.
When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.
You're so on point. Its an invisible disease. Even to my own family, its hard for them to understand why I don't feel well when I look perfectly normal. sigh..
Oh How TRUE Ruziska! I go through the same thing! I almost hugged my GI dr when I first met him because he was the first Dr to say "I understand and believe you are sick and I know your family and friends can see the change in you physically even though you look "fine" to me. I BELIEVE YOU". OMG!!! I about had a heart attack from the shock! He was so RIGHT! And YES, it is called the "invisible disease" for this VERY REASON! DUH to the Drs and to all the critics that need to live a day in our shoes huh! Of course when I have my Lupus rashes flare up for whatever the "trigger" may be, THEN I hear "OMG, you really are sick arent you?". Gee, really? No, I just WANT my life turned upside down and for my family to HURT from me not being what I used to be to and for them!
We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette