Coming Out with NF

And I don't mean that in the way that it might sound...

but having NF means that there are certain barriers around you - ones that may keep you in and ones that cetainly make you a bit distinguished from others.

I wondered if any of you had tried to explain the condition to a new supervisor or other coworkers for example. Do you leave it alone until it is asked about? If people start dropping curious hints...(perhaps someone will talk about a distant aunt with strange lesions) do you respond?

My experience has taught me that no matter what you do sometimes you will always suffer uncomfortable consequences: If I don't say anything, people may think I got into a fight or am a violent person because of the "droopy eye". If I do respond sometimes I've done so angrily and I end up chagrined because of my outburst: once someone said to me "What happened to your eye" and I yelled back "nothing happened, suck the fuck up...and several other explicatives...If i try to explain it calm and collectively someone might say something denigrating like "that's just the way you look" or even though they may have expressed curiosities, may give you a "why are you telling me this" stare...

anyway...just wanted to share a few things and see what the responses I get are like.

thanks

wc

By KittyLover
Posted June 28, 2009 at 3:20 pm
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lol - i have to say that i never thought about it that way. 'coming out' I like that phrase and think i will use it somewhere down the line.

I don't explain it unless something indirect ties into it. for instance, if there's some sort of outing (work related, etc. etc.), i would always mention that i need to stay out of the sun due to my health condition - and explain a tiny bit. i would take advantage of an opportunity and go from there.

i once was buying cosmetics at a department store and was looking for foundation for dry skin - my skin is dry. the lady at the counter said... are your sure yo don't want the oil-free foundation? i think it would be better suited for your.... uh.... complexion. i told her that my bumps weren't acne related, that they were a genetic condition and left it at that. didn't explain any further and she didn't ask any further. she just looked a bit sheepish and helped me with what i was looking for.

the example you gave about the aunt with strange lesions - i'd listen a bit more. kind of like you wanted to know more about it. i'd then say something to the extent that - i bet i'm making you think of your aunt...... or something like that. i wouldn't come across as being rude. but then again, i'm a 49 year old female so maybe my skills in handling public situations is slightly different than yours. if a person is outright rude - i don't know what i would say, to be honest with you.

i don't have anything visually noticable, regarding disfigurements, so i really can't say how i would respond. i don't think i'd go about it in the same way you have, regarding people asking about your eye.

i posted in another thread about how an ignorant woman asked me in a convenience store if i was contagious. i gave her a sarcastic response which made all the customers laugh at her which caused her to become visibly embarrassed (an added bonus!!! :P )

but as for 'coming out' lol! it's not like it's entirely a 'don't ask. don't tell' situation. there are people who have MS that walk funny - some look like they're drunk when they walk. From what I heard (i could be wrong) some carry a business type of card with them explaining their medical problem. And what about the people with Parkinsons? I'm sure they get asked alot of 'stupid' questions.

lol - the more and more i think about it - the more and more i'm not sure how to answer your question, now that i just thought about the people with ms and the people with parkinsons.

i'll be interested in seeing the responses too.

By dragonfly1980
Posted June 28, 2009 at 3:42 pm
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Yes I dont tell unless they ask and sometimes I dont even tell then. I know one time I was working in a jewlery store. I have tumor on my left wrist. I try and keep it covered by watches and braclets but this one day i forgot them. I was helping a couple look for a wedding set. They saw the tumor and asked me what it was. I nicely told them that I had a medical condition it was nothing. Just like a bump on my skin. The lady then said ok we are just looking for now thankyou. So I walked away and let them look. A little bit later I went back and asked if they were ready to look at something. The lady said is there someone eles that can help us. First thought that went in my mind was ...... HELL NO , nobody eles can help you. I started this I will finshis this. But I said no mama I am here and everyone eles is busy. She said she would wait. I asked her if it was because of my tumor. She said yes. She told me she didnt know if she would get it or not. I told her the only way you can get it is if your born with it. She said ok I still want someone eles. I got my manager and told him what was going on. He took care to the cutomer. I talked to him later that day and he told me that if a custmer has a issue with me to just get another empolye to take the cutomer. I left it alone not that i really wanted to but I'm not a real out going person so I dont really stick up for my self.

By sadderstar
Posted June 28, 2009 at 4:19 pm
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I have never really had anyone point out my tumors in disgust so I suppose I feel lucky for that. People are just ignorant and if someone were to, even though I know it would hurt, I think I would end up feeling more bad for them than myself. I do have a slight hump from my scoliosis though which I try to hide with a jacket at all times (when in public). That gave me a real hard time growing up. My scoliosis is fixed so it wont progress but kids can be cruel. Only once since I graduated high school in 2002 has someone brought it up and I explained to them what it was and why I had it and they apologized for the way they acted. That made me realize though that while I thought I had grown past the teasing in all actuality I had not. All those feelings from grade school came flooding back in.

Now, as far as "coming out" with it the only times I honestly have to do that is when other girls (and sometimes guys) ask when I am getting married to my boyfriend and when we are going to start having babies. I am currently undecided if I want to chance passing the NF on and I know that it is quite possible that it will cause the tumors to flair up because of the hormones which I would not be to happy about. Also when I have to explain the birth control issue and the hormones with that as well. I am totally rambling now but I guess the point of it all is people are just curious I guess. Even though its obnoxious, who else is going to tell them about our NF?

Dragonfly, I am so sorry that you had to go through that. To say this now after I just said what I said about people being curious and such almost cancels it out BUT people suck and she should have never done that. Curious or not that was rude and I am so sorry that happened to you. I am not sure what I would do. I can say only once when I had to explain my disease to someone did they look at me with caution until I informed them that it wasn't contagious. Someday when she is old and has liver spots galore all over her body, she will have someone ask her if THOSE are contagious and act disgusted and back away from her in fear of catching something that obviously isn't. Maybe then she will realize what a poop she was and how much that may have hurt you. Karma is a kicker. (totally wanted to say a different word but wanted to keep that as pg as possible.) :P

<3 amber skye

By dragonfly1980
Posted June 28, 2009 at 10:48 pm
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Thank you, It doesnt bother me any more, It did when it happend. My kids taught me a lot since then. They started asking me more questions about the NF and keep telling me that they love me any way no matter how many I have. That helps alot. I have 4 kids and only one of them have NF. Thank you again people can be mean but I guess we have to be the srtong ones.

By Markjh
Posted June 29, 2009 at 9:44 am
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I work in retail and once in a greayt while a customer won't want me to help them. I just say OK and move on to the next one. Mostly I just have fun with NF. My favorite excuse at work is "I would have got that right but I have these darn tumors in my head." It's worked so well over the years that now when I mess up the other guys all say "You can't blame him. He has those darn tumors in his head." They do all watch out for me and ask if I need help with the heavy stuff, and the #1 rule is that I'm not allowed to even look at a ladder. (balance problems)
Mark

By PVA
Posted June 29, 2009 at 9:16 pm
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Markjh

You're funny. :-P
We could probably use that one when people ask us stupid questions.
"I'm sorry, I don't get what you're saying. I have all these bumps in my head and get a little slow sometime." lol.

By poopotpie
Posted July 3, 2009 at 12:05 am
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I have had the gambit of experiences from insultingly personal questions and people (including medical) who looked at me with disgust (medical- and barely wanted to touch me to draw blood), to a dear friend who constantly professed that she wanted to oil me up and read me like braille. I used to be rather introverted and withdrawn because of my CAL spots and bumps, but one day stumbled upon that great big wonderful world of punk rock, and through punk met some absolutely fantastic people who taught me that the external doesn't matter, it's the internal you that counts.

If a person has a question or is curious, I am more than happy to talk to them and educate them to the best of my ability. However, I also now have the opinion that if somebody has a problem with the way I look (ie am disgusted, repulsed, etc), they can stuff it.

As an aside, I used to read comic books, and always thought that I would make the best super villain due to the mutated genes and bumps. I could say, squeeze them and they would spit acid. I also thought I could have a band and name it Chromosome 17 and the mutant genes.

I had a lot of time on my hands.

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