Im sure you all know what it feels like to be starred at because your face is swollen or red.. and it dosent feel too good for the little girl in the supermarket to say(not so quietly) MOMMY WHATS WRONG WITH HER FACE?.. but its more acceptable for children. what really makes me sad is when someone my age says that your a hypochondriac and that you just have warts and skin tags on your face..when your standing close enough to hear! people are so ignorant and just downright mean. id like to say if they were warts or skin tags they wouldn't be a problem because I could get them removed!!! that's why I hate when people ask me about this disease because they just don't understand..and it makes me emotional because they DONT KNOW WHAT ITS LIKE TO BE LIKE US!!!! I don't like to go out into public when im flaring because people look at me like its contagious..but im glad I have family and true friends to help support me. beauty is on the inside:)
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Hi
You know you're not a hypochondriac and that's all that counts. Your family and friends is all that matters Not strangers.
Beauty IS on the inside you MUST ignore them. You must be young because when you get old other people's opinions and coments are not imporant. Everyone here knows.
Stay postive.
Cindy
My goodness, Kourtney, you are beautiful! I don't know why people are so mean, It depends on my mood as to what I would say or if I would say anything. I have been known to be quite "creative" with answers. What came to mind would be to say that my face is in the process of being eaten away by some made up condition but then that could be another issue in the long run. It makes me angry for you! Hang in there and know that there are more people that care about you and love you then those mean people you encountered.
Hi!, sorry for those that are simple mind people, not excluding the children only because they really don’t know any better! My problem at first was being you afraid to leave home and did not want no visits ! Until one day me granddaughter said grandma am not afraid of you , Please go to the store with me and mommy(my daughter)! Yes I had a moment of crying in the bathroom ! My daughter says , mom you can’t stay in the house forever! So I got dressed and off we went to the stores and Yes people starred and we starred back at many along with laughing and saying ask me I will tell you!! We were proud that day!! My granddaughter is the oldest of 3and she is a star sent from Heaven to guide me on the days that I just won’t to die, but I can’t cause she won’t let me! I love her for that! Yes she is a whippersnapper ! , am very happy that I am her grandma…so dont you be afraid of who you are nor what you are going through-shine like a star…Beverly L.
I completely get it. I deal with same thing. I get the nosey ppl that feel the need to come up to me and tell me my face is too red and thar i need to use more makeup or the the person that has to comment that i am so sunburned. I just dont understand why ppl have to comment on someones appearance to begin with. Ive never felt the need to go up to someone and speak to their appearance. Yet my boyfriend thinks im too self conscience. Its bad enough battling this illness let alone dealing with ppl picking at my appearance on top of it all. You have my understanding and support.
Beautiful!
I know how you feel. I don't like my photo taken when daughter wants to take family photo's.
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I get tired hearing people say it is all in my head and there is nothing wrong but I get so tired when I have Lupus fare ups. I don't have outside family support so it is a battle I fight on my own and alone.
I have difficulties walking long distances and so I have to have the aid of a wheel chair for long distances. When I first returned to school to fill out paper work and such since I missed the rest of the semester of school. Many people that I would talk to wouldnt even look at me. It hurt at first but I started to get used to it and I just laugh at it now. As someone said sometimes its just because they dont know what to say. They way the look at me is like I am going to come after them or something! I have had several people look at me and say your not sick its all in your head you dont have nothing wrong. that has always been hard, its like here you live in my body for a day and see if you can do it. I love little kids for the fact they are so innocent and just came straight up to you and ask you point blank whats wrong. All the little kids in the church are so sweet they always ask how I am doing and let me know they are praying for me. Thoughs little kids keep me going,
I love your comment about beauty is on the inside. I just did a little chat on that with some teen girls in our church. How the outside will change and it will never be the same but the inside is what lasts and is what should matter. You are a very beautiful women and I wish you the best! :)
I'm sorry you're having to go through this, but you know we understand.
Hugs
It has taken me YEARS to get certain family members to accept how sick I really am...they finally get after 10 years! As for the general public, if someone says something to me...I tell them about my SLE Lupus and educate them. I tell anybody who will listen about it.....in a matter of fact way...I refuse to be ashamed or hide anymore. We didn't choose this life, it was given to us for some reason and I know we will lead by example and others will benefit from it.
Keep the faith!
Lori
thanks guys..haha its hard for me to not to be mean back sometimes. I was asked by a guy hey what is wrong with your face? and all I could say is I have a disease what happened to yours? lol ..or when the lady at bath and body works asked if it was contagious and I just pretended to cough on her and said ya but don't worry only stuoid people can catch it lol. thanks to all of you guys it does make me feel better to know im not alone
Kourtney
That was great comeback. I can;t believe how insensitive adults can be.
don't let them get to you.
Cindy
That is exactly what I would have done! Good for you Kourtney!
My favorite is, "that can’t be your daughter. She’s too beautiful…
I must admit....I do want to let them have it, too!
Lori
love it...hope yo do not mind...copied it for myself!! so true.
Ann A. said:
I understand. Earlier this year I was in the hospital for 10 days. 40 mg prednisone and ACTHAR shots. I am still on prednisone but thankfully now on 8mg. I am still swollen and flushed and of course have gained 20 lbs. I had to work so after missing a total of 3 weeks at work I had to go back. It was hard just to physically be there. But it didn’t make it easier when my customers would constantly ask “what happened to your face?!” Or worse yet didn’t even recognize me at all. I never thought of myself as vain, but it is hard.
Hi!, We are here at Anytime for YOU, always remember that!!..Beverly L.
lizluvsu said:
I get tired hearing people say it is all in my head and there is nothing wrong but I get so tired when I have Lupus fare ups. I don’t have outside family support so it is a battle I fight on my own and alone.
Good Morning everyone:
I don't understand people not understanding our disease. When I was diagnosed some of my friends and family went to the "net: to find out what Lupus is. Doesn't anyone elses family do that???? I have never had a problem with my family or friendsThey understand if I can't go to the mall and walk thru all the stores, I can only walk thru a couple. I guess you HAVE to ignore the stares and whispers, or you will make yourself crazy .
Have a good day and don't let people GET to you.
Cindy