Hello everyone,
I have a few questions about the "Lupus" rash. Butterfly/ Malar rash "schmetterling" etc.
1. Does it bother you? (burning, itching, or just cosmetic unappealing)
2. Do other people ever mention it? Question you what it is, or make comments?
3. How do you answer such questions? Do you go into explaination about the disease, or just Simply say "it's a rash" or "it's from the Sun"?
I have a wonderful "textbook" Butterfly. It is more or less always present. Sometimes more prominent other times barely visable. I like to call it the Lupometer. It tells a little bit about how active the disease is. In general it doesn't bother me, it is not painful nor does it itch, etc. Cosmetically when it is not glowing red, it looks quite healthy! When it flares up (mostly from the Sun and then within minutes) often people say things like "oh, did you get a sunburn! What did you have on for a mask that made such strange marks?" and " Been in the fresh air? I can see on your face, or are you embarrassed?"
Mostly stupid comments, to which I respond "ja, it comes from the sun" Then they assume it is an Allergy. Or I say it comes from my illness, which is also sun sensitive bla, bla,bla which of course is to detailed and they don't want to hear it or can't comprehend it anyway.
Worse is the comments I get about my hands (thanks to Maurice Raynaud) I have lost the tips of 2 Fingers and always in the winter have necrosis (black crusty wounds) on the fingertips. I have stopped trying to explain and just make up wild stories.
I was on Mt. Everest last week, and it was sooooooo cold!
or, I was in Canada on an expidition and got attacked by Wolves.......well a "Wolf" is actually responsible so it's not a total lie
I would like to hear your explainations and the reactions you have received.
Thanks,
Monique
I have a few questions about the "Lupus" rash. Butterfly/ Malar rash "schmetterling" etc.
1. Does it bother you? (burning, itching, or just cosmetic unappealing)
2. Do other people ever mention it? Question you what it is, or make comments?
3. How do you answer such questions? Do you go into explaination about the disease, or just Simply say "it's a rash" or "it's from the Sun"?
I have a wonderful "textbook" Butterfly. It is more or less always present. Sometimes more prominent other times barely visable. I like to call it the Lupometer. It tells a little bit about how active the disease is. In general it doesn't bother me, it is not painful nor does it itch, etc. Cosmetically when it is not glowing red, it looks quite healthy! When it flares up (mostly from the Sun and then within minutes) often people say things like "oh, did you get a sunburn! What did you have on for a mask that made such strange marks?" and " Been in the fresh air? I can see on your face, or are you embarrassed?"
Mostly stupid comments, to which I respond "ja, it comes from the sun" Then they assume it is an Allergy. Or I say it comes from my illness, which is also sun sensitive bla, bla,bla which of course is to detailed and they don't want to hear it or can't comprehend it anyway.
Worse is the comments I get about my hands (thanks to Maurice Raynaud) I have lost the tips of 2 Fingers and always in the winter have necrosis (black crusty wounds) on the fingertips. I have stopped trying to explain and just make up wild stories.
I was on Mt. Everest last week, and it was sooooooo cold!
or, I was in Canada on an expidition and got attacked by Wolves.......well a "Wolf" is actually responsible so it's not a total lie
I would like to hear your explainations and the reactions you have received.
Thanks,
Monique