what do you say to someone who ask you what is all over your

[littlefire9]

I have several tumours all over my body and it seems I get asked a lot about them. I am a Child and Youth Worker, and have worked with children since I was 16. I really do not mind when kids or teens ask me about them. Now when adults ask, I mind. One woman recently asked me about the bumps on my face and sujested I use clenique. When I told her they were tumours, she asked why I had not had lazer done on them. She seemed discusted by my bumps. It is not always that people ask, but the tone in which the questions are posed that makes me react. A nurse once said "Eww what are these?" That was hurtfull and mean.

Kids are inocent and I do not mind telling them, as they are empathetic towards me and usually ask questions about how I feel with them and if they hurt. One year while I was working in a grade one classroom, as an Educational Assistant, we were having a disscustion about freckles. One child was not happy about their freckles, so I was telling them that they are sun kisses and it means the sun loves them. One little boy looked up at me and said "Well the rocks must just love you!" What a thought. This kid was so honest and loving. The kids liked his annalogy and mine on how we looked. I realize that these kids and I really learned something that day. We are all different and despite what is on our face we are all still loved.

I try to look back at this when people ask me about my bumps, I am looking to come up with a come back that will make the person think about what they are saying. I did want to cause imbarassment untill I started reading this board. I never really looked at it as an oportunity to educate. I guess I have to learn to remove the emotion and take the opportunity to educate people on this issue.

Thanks for sharring your POV all.

Penni

[rnay]

this is soooo coool that I found this particular
question. It is exactly why I got on he website
tonight. I too get asked everyday what is wrong with your face? or what is that all over your face. Today it really bothered me. This person was really rude. I explained that it was called neurofibromasois, that I had inherited it from my father, and that he could not catch it from me. I wont print his response.

anyway my husband could tell something was bothering me and questioned me about it.
he told me to tell them( next person who asked
me what is that on your face) ......it is
the same thing that is on my ass.
now I could never do that but I will answer with the same thing that is on the rest of my body.

it use to not bother me , but there are times when I just want to stay at home and never go out again or wear something over my face and long sleeve, gloves, and just cover up my entire body so that no one will be offened by me.

[Kilene]

My Dad has the 'bumps' all over his face. Usually its the kids that stare at him and walk up and ask him about the bumps. My dad would reply, "I forgot to eat my corn, this is what happens when you don't". My dad, ever the joker will come up with another 'far out' explanation..."I come from the planet Zhort. I just landed on earth yesterday to study little kids like you." Of course he doesn't scare them, they just get really excited and tell their parent's that he's from outer space. Of course you get mixed reactions from parents about the 'planet' story.
I myself have NF and I'm starting to get the Nodules. The Nodules started growing for me in my early 20's. I'm now going on 28 and I'm noticing that the bumps are becoming more noticable on my arms, hands, face....etc.
I don't know what I'm going to say when a child or an adult asks me what's wrong. Of course I'll tell them I have the disease, but it gets hard and frustrating because the people usually don't know about NF. So I basically have to give them a condensed version about the disease. I don't mind it when people ask me why I look the way I do. It's the constent staring, pointing, and whispering that bug me. I think it's rude when people do that.
It's not like I'm not 'used' to the staring. I have my breast bone 'sticking out'. All of my Tumors are growing inside my body wrapped all around my vital organs. From the tumors that are wrapped around my lungs and heart, the tumors has pushed my breast bone out when I started puberty. I'm used to the staring and whispering, I've had to deal with it starting at the age of 8. I can handle the stares and I'm sure when the time comes, I'll know what to say when someone asks about 'the bumps'.

<small>[ June 22, 2004, 03:41 AM: Message edited by: Budget's Gal ]</small>

[saltshaker]

Depending how they ask. Usually I just tell them they're fatty tumors and it is hereditary. I did have one guy back around 83-84 say what happen to you, a frog piss on ya. I grabbed him by the ears and planted a kiss on him and said "No, I have AIDS"! He bout crapped his pants, wanted to hit me. Told him, "watch it, you don't want me bleeding on you.

<small>[ July 09, 2004, 09:24 PM: Message edited by: saltshaker ]</small>

[Stranger]

If it is a child I will kneel down to their level and I will tell them that I was born this way. and most children are just curious. sometimes that will be good enough for them.
and if it is an adult. first of all it depends on their attitude toward me. I work in the public everyday and I run across a lot of different people...sometimes I will run across people who are just looking for trouble....no matter what anyone looks like

[NannyX]

I work with the babies up to 5 years old at my church. These children ask what the bumps are and I try to explain to these children that the bumps came from God. I also tell them that my mommy and grandmommy also had them. Many adults look at me though I am contagious, and many avoid being near me. I usually tell these people that I am okay with the way I look, and it should not bother them, if I am okay with the way I look. Some people are rude and ask if it can kill me- - I tell them that yes this disorder called neurofibromatosis will eventually
probably cause my death. But I am in God's hands and He will determine when I die. Thanks for letting me vent!!

[Wendy]

Wow I think thgat person was rude and immature.

When I gve my sister a baby shower ( as in all adults) her friend looksat me and says as a kid I was affraid of you becasue of all your spots.
I was shocked that she had the gull and immaturity to say that. especially as a child I was affraid people woiuld be affraid of me. I jsut told her owell I didnt even want to explain anything to her.
But brought back lots of me being self concious. that was almost 5 years ago. and I am still worried once again , after it took me all those years to come to terms with it. But I am again
My sweet little 3 year old kisses a spot on my leg and says "all better mom" and it does make it all better