I get asked so much what are those scars on my arms... My scars seems to take forever heal. I get so tired of the question, sometimes I just ignore folks.. I just hate telling people that I have lupus because then I have to explain what it is?? It's so aggravating that sometimes I want to wear long sleeves and gloves just to keep covered..
What do you all say when someone asks about your scars???
I've only been asked about my scars, which are on my face, chest and arms a few times, I usually reply its an allergy, they're usually strangers that ask, which is to me anyway really rude, its a short polite answer, compared to what I'd really like to tell them. I almost always wear long sleeves, the least little exposure to sun tends to aggravate the rash no matter what I do. Hope this helps.
I once told a lady I was in a car wreck ad just left it at that
I only have a small few and up North people just stare but in the South they want to know what’s wrong with you and why do you look like that, so my answer is usually either I was in a joust and you should see the other guy or I was in a dance battle to the death and you should see the other guy. I too find it incredibly rude to ask a person something like that, so my answer is just as flippant.
SCARS, I was diagnosed with lupus a few months ago. No one said I would also have the pleasure of scaring to go along with, joint pain, being tired, along with list of other things I am currently dealing with. My pray is if I must have something let it be something I can LIVE with. I am adding Give me what I need to LIVE with IT and not in it.
I really like your answer, I'm a native chicagoan transplanted to florida, you're right up north they stare, down here they ask, I
will remember your answers they're great.
Elita said:
I only have a small few and up North people just stare but in the South they want to know what's wrong with you and why do you look like that, so my answer is usually either I was in a joust and you should see the other guy or I was in a dance battle to the death and you should see the other guy. I too find it incredibly rude to ask a person something like that, so my answer is just as flippant.
Few people have asked me about my scars but a few years ago I had really bad lesions all over my face and lips. To the untrained eye, the ones on my lips looked like they could pass for mouth herpes or some kind of std so people used to stare. A few asked and to be honest I was kinda grateful they asked. A lot of people don’t know about lupus and even if they have heard the name from a TV show or media, they don’t know what it really is. I like telling people about lupus because the more people that know, the better chances that research will be funded and people will donate. It can be embarrassing when people ask, and you might just not be feeling in the mood, but I always preferred the opportunity to explain what it was and to teach people, than having to deal with the people staring and pretending nothing was wrong or even makin up their own stories. I mean one of the things us lupus people complain about is how people just don’t understand. we can be closed off about our condition and try to hide it. Well this is your chance to try to explain it. I just went to the dermatologist the other day and they gave me a scar cream that is usually used for plastic surgeon patients that is supposed to be good (I have scarring all over my breast and shoulder). Maybe go to a dermatologist and ask If there is anything for you, or even go to a plastic surgeons office. Good luck
Thank you all for your responses... I'm adjusting to this all still and I guess I'm just finding my way.. I'm never rude when folks ask but they do look at me like I have something I'm spreading around... I'll just have to learn a good short answer to explain what it is and keep it moving.. Lupus Sucks!!!!
Ann A, what you just said makes so much sense... I'm always in a tank top or halter and I'm miserable and I think I now understand why.. The sun is not my friend and the sooner I realize that the better off I'll be.. I think I now have these lesions because I"m always in the sun, especially driving... They itch like crazy and they are all over my arms and hands.. I'm fortunate that they aren't on my face but they are also in my hair.. I need to make an appointment with my dermatologist to see if they can help me with any of this.. Thank you so much..
Ann A. said:
Dear Torie
I do get rashes -lesions- on any part of my body that is exposed to the sunlight. When these rashes heal they do not leave permanent scars like the discoid lesions do. But because I am so photosensitive I do wear long sleeves whenever I leave the house. Not only are my sleeves long but they are either made from SPF cloth -like my Coolibar shirts -or I have washed them in Sungaurd. When I really want to wear clothes with shorter sleeves to a dress up event and getting there involves being exposed to the sun, I wear "sun sleeves." I have some plain ones -like they make for outdoor sports - and I have some dressier ones. Once I am safely away from UV, I slip them off like gloves.
For years I was only getting lesions on my hands and forearms. I finally figured out that this was happening because of the exposure when I drive. So I started wearing UV protective gloves. Then I went through the process of getting my vehicle registration amended so that I could get all around sunshading on my car,
Right now I have one active lesion. It appears that I went outside with a gap between my sunscreen and my collar - may be I did not fasten a top button. But when it heals - And that could take years - it won't leave a permanent scar like the DLE left on my face. When DLE lesions heal, they leave permanent scars.
But protecting myself from UV requires a lot of long sleeves and other sun protection techniques.
and I have got to stop wearing them.. I always have on either a tank or t-shirt... I'll definitely do better with dressing appropriately....
Ann A. said:
Torie
The sun is your mortal enemy. UV exposure can cause flares that damage internal organs even when there is no skin reaction. Tank tops are suicidal.
Thanks Ann... I'm new to all this, I was just diagnosed 2 years ago.. I'll get better, hopefully... I do however, put a shirt over my arms and legs when I'm in a car.... You said it best with "Tank tops are suicidal".. I'm just sooo happy my brothers built my mom an enclosed porch with screens so we can enjoy the day without the sun beaming directly down on us..
Thank you Ann... I'm always looking for new information about this crazy illness
HI Tori
I have DLE and SLE I have breakouts in my head and I do get rashes and what not on arms and back. This post has been very helpful.
Ann A. said:
Dear PJ,
Not all forms of lupus involve scars. My scars are from discoid lupus -DLE. The rashes that are associated with the SLE do not leave scars for me.
I stay out of the sun, but still have these ugly purplish scars on both arms. After having them for about a year, I guess they aren't going away. If anyone knows of a remedy to lighten them, pls let me know.