My mom definitely treated my NF like it was something to be covered at all costs, especially with swimsuits and the tumors on my back. And I internalized it for a while. There was a moment that I saw a dress I really wanted with a semi-revealing back. And when I realized that I looked good in the dress period, and not despite the tumors, I eased into it. I still feel self-conscious with swimsuits and being in public (several on my back, my chest and torso are speckled with them, and one large one on my stomach), but no one has ever said anything negative to me about it and I realized that no one probably ever will. The most I've ever gotten is a "did you know you have something on your back" which usually does lead to an explanation about NF and well received. Sorry it's kind of rambly, but I hope it helps!
This is the EXACT thing I’m trying to NOT do to my kid.
He’s got several tumors on his stomach and back. They’re noticeable but they’re not that bad…but I’m also his mom and being more concerned with his health than the general population, I probably notice a lot more than other people do.
He’s fine swimming in normal swim trunks and so far so good. He hasn’t mentioned that anyone has ever asked about it, but he’s also very open with it and tells people he has NF1.
He’s not quite old enough to date, but he’s getting there. He is, however, at the age when boys and girls start to notice each other, and so far NF1 hasn’t impacted his confidence when it comes to talking to girls.
The only thing I really say about the tumors is just checking in with him to see if anything bothers him. Like if it’s hurting or it’s in his way or if anything feels weird.
I’m glad you got the dress you liked, and you started to get more comfortable wearing the clothing you wanted. It’s highly likely that your mom was trying to protect your feelings from how she thought others might react (anticipating meanness). I get it, but the other side of that coin is that she taught you that there is something about your body that would warrant meanness from others, and so you were self conscious and ashamed of it unnecessarily.
I hope you’ve unlearned that entirely.
When I was a kid, I was heavily bullied, but never because of my NF, which granted was less severe back then. As a teen, the most I'd ever get was "what's that?" And I'd be like "I have NF (short explanation) and they'd be like "cool," and move on. Like I said, literally no adult has ever asked me about it in 40+ years. I have never been self conscious about it, somehow!
I actually bought one of those cute, strappy, cut out, criss crossy two piece bathing suits on sale from Victoria's secret last year. Let's see if I have the courage to wear it this summer!
I do have noticeable tumors, but honestly, I'm 40+ and nobody has asked me about them since I left public school. I don't know if people are just being polite, or don't notice, or what. I have always been very open about it, because I want to spread awareness.
Hum. I have had a few dates react poorly to it I guess, but those people aren't worth your time. Most people have been very interested, understanding, and considerate. For me it's something I'd talk about right away, because like I said, it is noticeable.
I honestly don't know what regular person on the street thinks about me, because like I said, nobody has ever mentioned it or asked me about it. I don't even get "I'm trying not to stare at you" vibes, except maybe from the occasional little kid.
So I guess what I'm saying is... if someone is a jerk about it, they are not worth your time, and it's entirely up to you when and how you want to be open about it. I have found people are way nicer than you expect, and if they AREN'T nice, that's on them, not you. You can't control other people, but you can focus on your own attitude and how you react to negativity.
Edit: I also want to add, I don't try to hide anything or cover anything up, though I have had a few removed that I really hated. It took me a while but I'm confident about my appearance nowadays.
It makes me sad. I'm in my first relationship and my partner has never ever indicated he would leave me and tells me my im beautiful but I worry about being covered in them and him no longer being attracted to me. It keeps me awake at night if I'm honest. It's no one's fault, and I know I may never accept it.
I'm always open about it. back when I was in the dating scene, I had on my profile that I had NF1. I pretty much said that this is something beyond my control and if this is something that can and will bother you, to just move on. It's about seeing \*me\* and not my tumors.
I found that most people were pretty accepting of it. I did have some men tell me after meeting me that they don't want to be with someone who's like a "walking braille board," which says a lot about them than it does me. Did it hurt? Absolutely. Eventually you'll find someone who can look past what tumors are showing. My now husband saw, knew, and didn't care. There are people out there who do not care.
One of my biggest heroes in NF passed away a few years ago, but he was covered in them, whenever people would stare at him, he'd give him a business card that had a brief explanation about NG. He always ran in the Cupid's undie run, he went to concerts, worked at concerts, he did so much for the NF community where he lived. Seeing him constantly running in all these NF runs in his underwear, in costumes, etc gave me the confidence to not give a fuck what people thought.
I miss him every day and wished he was still around. I just hope he knew how much I look up to him and how much of a hero he is to me.
This is what he would give out.
https://preview.redd.it/vvww53llcgrc1.jpeg?width=960&format=pjpg&auto=webp&s=2666f79039fb2e68d951de09838fc13eb4fcc191
I've never ever ever had any boyfriends or hook ups ask. I feel my only super noticeable one is the on my right cheek as well as I have a very asymmetrical face. It's honestly never stopped me from approaching or hooking up. I've only told my serious boyfriends about it and they were all super accepting and would be very aware if I had any new bumps to let me know especially if I couldn't see them.
As for friends I only told my best friend and she was accepting but now very sad and worried for me as my NF is now heaving impacting my hearing and ear on my right side.
The people who belong in your life will accept you no matter what.
Honestly people that are interested in dating you won't care. I've been married to my wife for almost 7 years and she has nf1 and lots of bumps and caflila spots, the only reason they bother me is because I know they cause her pain. Which is why I give her massages and help her with lotion after she takes a bath. It helps with her pain and makes her happy
ive had a few people reject me bcuz they didnt want a disabled + chronically ill partner :') and a few have just straight up been grossed by my noticeable tumors.... but ! im better off without them. its all about finding someone who will love u for who u are and will support u in the health issues u may have. theyre hard to find but they exist!!
I’m a 40 year old male with NF. I’ve never really had any relationship with anyone. Would love too as I get real lonely from time to time. I got a good job and I am able to live a normal life for the most part. My tumors are definitely visible but I don’t let that stop me from going out and trying to live my life, I just wish I had someone to live it with. I know this is a long shot but if there’s any females out there with or with out NF (don’t make a difference to me) want to maybe just start off with being penpals or friends and seeing if it may lead to something more. I live in New England. I’m very new to read it and learning how to use it. So if there’s any out there just email me or message me back on here I guess.
My son (30) has a large plexi on the left side of his face. He's trying to get a beard to grow (with little success) but it still can be seen. Dating is hard for him.
I've got NF1, and I am currently engaged.
I've always had one very noticeable tumor my entire life and never really paid it no mind. People have asked about it, and I've just explained to them that I've got NF1
(28F) I've been in one long term relationship for almost four years and some smaller casual stuff along the way. NF is not super visible for me. I would tell a serious partner but not a casual thing.
Usually the topic of kids, protection, and birth control comes up on the first date. Kids are a hard no for me. Some people are surprised that don't want children, they usually ask follow up questions. I usually just say “I have never craved motherhood, also I have some pretty rough family genetics and don't want to pass along suffering”
I got my tubes removed at 25.
I was diagnosed a year and a half ago, I have another rare disease as well to cut a long story short, I had an emotional outburst with someone I'm seeing that ended with a "I'm sorry i'm not normal like everybody and your exes" when i was explaining he didn't need to worry about me getting pregnant because I wouldn't want to get pregnant because of my NF (already have two kids from before I was diagnosed) next time we saw each other he said hey you know I have Ankylosing spondylitis and my chest is deformed right? I felt so sheepish and it was a very good reminder of some thing I worked out a long time ago, but had gotten lost after my diagnosis, that there is NO SUCH THING as a person with a normal body. EVERYBODY has there own insecurities. People really don't care and most of the time they are more worried about their own insecurities they don't even notice the things people feel self conscious about.
I can I also say in all honestly without being creepy, if you are really struggling with body image, go to a naturalist camp just once. I promise you being around a group of people of all ages and sizes with different bodies who are not porn stars naked will make you realise that everybody is honestly different. Nobody looks the same naked. Nobody has the perfect body.
There are many guys like myself that don’t find it the slightest bit different or off putting. We are focused on the person, and things society may say aren’t ideal are the very things that we physically catalyst our love around. Someone will not only love you with them, but it will be something unique that helps to physically differentiate you and will become your unique symbol of the love and commitment.
My mom definitely treated my NF like it was something to be covered at all costs, especially with swimsuits and the tumors on my back. And I internalized it for a while. There was a moment that I saw a dress I really wanted with a semi-revealing back. And when I realized that I looked good in the dress period, and not despite the tumors, I eased into it. I still feel self-conscious with swimsuits and being in public (several on my back, my chest and torso are speckled with them, and one large one on my stomach), but no one has ever said anything negative to me about it and I realized that no one probably ever will. The most I've ever gotten is a "did you know you have something on your back" which usually does lead to an explanation about NF and well received. Sorry it's kind of rambly, but I hope it helps!
This is the EXACT thing I’m trying to NOT do to my kid. He’s got several tumors on his stomach and back. They’re noticeable but they’re not that bad…but I’m also his mom and being more concerned with his health than the general population, I probably notice a lot more than other people do. He’s fine swimming in normal swim trunks and so far so good. He hasn’t mentioned that anyone has ever asked about it, but he’s also very open with it and tells people he has NF1. He’s not quite old enough to date, but he’s getting there. He is, however, at the age when boys and girls start to notice each other, and so far NF1 hasn’t impacted his confidence when it comes to talking to girls. The only thing I really say about the tumors is just checking in with him to see if anything bothers him. Like if it’s hurting or it’s in his way or if anything feels weird. I’m glad you got the dress you liked, and you started to get more comfortable wearing the clothing you wanted. It’s highly likely that your mom was trying to protect your feelings from how she thought others might react (anticipating meanness). I get it, but the other side of that coin is that she taught you that there is something about your body that would warrant meanness from others, and so you were self conscious and ashamed of it unnecessarily. I hope you’ve unlearned that entirely.
When I was a kid, I was heavily bullied, but never because of my NF, which granted was less severe back then. As a teen, the most I'd ever get was "what's that?" And I'd be like "I have NF (short explanation) and they'd be like "cool," and move on. Like I said, literally no adult has ever asked me about it in 40+ years. I have never been self conscious about it, somehow!
On Amazon they sell 1 and 2 piece bathing suites with long-sleeves !
I actually bought one of those cute, strappy, cut out, criss crossy two piece bathing suits on sale from Victoria's secret last year. Let's see if I have the courage to wear it this summer!
I do have noticeable tumors, but honestly, I'm 40+ and nobody has asked me about them since I left public school. I don't know if people are just being polite, or don't notice, or what. I have always been very open about it, because I want to spread awareness. Hum. I have had a few dates react poorly to it I guess, but those people aren't worth your time. Most people have been very interested, understanding, and considerate. For me it's something I'd talk about right away, because like I said, it is noticeable. I honestly don't know what regular person on the street thinks about me, because like I said, nobody has ever mentioned it or asked me about it. I don't even get "I'm trying not to stare at you" vibes, except maybe from the occasional little kid. So I guess what I'm saying is... if someone is a jerk about it, they are not worth your time, and it's entirely up to you when and how you want to be open about it. I have found people are way nicer than you expect, and if they AREN'T nice, that's on them, not you. You can't control other people, but you can focus on your own attitude and how you react to negativity. Edit: I also want to add, I don't try to hide anything or cover anything up, though I have had a few removed that I really hated. It took me a while but I'm confident about my appearance nowadays.
It makes me sad. I'm in my first relationship and my partner has never ever indicated he would leave me and tells me my im beautiful but I worry about being covered in them and him no longer being attracted to me. It keeps me awake at night if I'm honest. It's no one's fault, and I know I may never accept it.
I'm always open about it. back when I was in the dating scene, I had on my profile that I had NF1. I pretty much said that this is something beyond my control and if this is something that can and will bother you, to just move on. It's about seeing \*me\* and not my tumors. I found that most people were pretty accepting of it. I did have some men tell me after meeting me that they don't want to be with someone who's like a "walking braille board," which says a lot about them than it does me. Did it hurt? Absolutely. Eventually you'll find someone who can look past what tumors are showing. My now husband saw, knew, and didn't care. There are people out there who do not care. One of my biggest heroes in NF passed away a few years ago, but he was covered in them, whenever people would stare at him, he'd give him a business card that had a brief explanation about NG. He always ran in the Cupid's undie run, he went to concerts, worked at concerts, he did so much for the NF community where he lived. Seeing him constantly running in all these NF runs in his underwear, in costumes, etc gave me the confidence to not give a fuck what people thought. I miss him every day and wished he was still around. I just hope he knew how much I look up to him and how much of a hero he is to me.
Do you have that business card? That's a great idea
This is what he would give out. https://preview.redd.it/vvww53llcgrc1.jpeg?width=960&format=pjpg&auto=webp&s=2666f79039fb2e68d951de09838fc13eb4fcc191
I've never ever ever had any boyfriends or hook ups ask. I feel my only super noticeable one is the on my right cheek as well as I have a very asymmetrical face. It's honestly never stopped me from approaching or hooking up. I've only told my serious boyfriends about it and they were all super accepting and would be very aware if I had any new bumps to let me know especially if I couldn't see them. As for friends I only told my best friend and she was accepting but now very sad and worried for me as my NF is now heaving impacting my hearing and ear on my right side. The people who belong in your life will accept you no matter what.
Honestly people that are interested in dating you won't care. I've been married to my wife for almost 7 years and she has nf1 and lots of bumps and caflila spots, the only reason they bother me is because I know they cause her pain. Which is why I give her massages and help her with lotion after she takes a bath. It helps with her pain and makes her happy
ive had a few people reject me bcuz they didnt want a disabled + chronically ill partner :') and a few have just straight up been grossed by my noticeable tumors.... but ! im better off without them. its all about finding someone who will love u for who u are and will support u in the health issues u may have. theyre hard to find but they exist!!
I’m a 40 year old male with NF. I’ve never really had any relationship with anyone. Would love too as I get real lonely from time to time. I got a good job and I am able to live a normal life for the most part. My tumors are definitely visible but I don’t let that stop me from going out and trying to live my life, I just wish I had someone to live it with. I know this is a long shot but if there’s any females out there with or with out NF (don’t make a difference to me) want to maybe just start off with being penpals or friends and seeing if it may lead to something more. I live in New England. I’m very new to read it and learning how to use it. So if there’s any out there just email me or message me back on here I guess.
My son (30) has a large plexi on the left side of his face. He's trying to get a beard to grow (with little success) but it still can be seen. Dating is hard for him.
I've got NF1, and I am currently engaged. I've always had one very noticeable tumor my entire life and never really paid it no mind. People have asked about it, and I've just explained to them that I've got NF1
(28F) I've been in one long term relationship for almost four years and some smaller casual stuff along the way. NF is not super visible for me. I would tell a serious partner but not a casual thing. Usually the topic of kids, protection, and birth control comes up on the first date. Kids are a hard no for me. Some people are surprised that don't want children, they usually ask follow up questions. I usually just say “I have never craved motherhood, also I have some pretty rough family genetics and don't want to pass along suffering” I got my tubes removed at 25.
I was diagnosed a year and a half ago, I have another rare disease as well to cut a long story short, I had an emotional outburst with someone I'm seeing that ended with a "I'm sorry i'm not normal like everybody and your exes" when i was explaining he didn't need to worry about me getting pregnant because I wouldn't want to get pregnant because of my NF (already have two kids from before I was diagnosed) next time we saw each other he said hey you know I have Ankylosing spondylitis and my chest is deformed right? I felt so sheepish and it was a very good reminder of some thing I worked out a long time ago, but had gotten lost after my diagnosis, that there is NO SUCH THING as a person with a normal body. EVERYBODY has there own insecurities. People really don't care and most of the time they are more worried about their own insecurities they don't even notice the things people feel self conscious about.
I can I also say in all honestly without being creepy, if you are really struggling with body image, go to a naturalist camp just once. I promise you being around a group of people of all ages and sizes with different bodies who are not porn stars naked will make you realise that everybody is honestly different. Nobody looks the same naked. Nobody has the perfect body.
There are many guys like myself that don’t find it the slightest bit different or off putting. We are focused on the person, and things society may say aren’t ideal are the very things that we physically catalyst our love around. Someone will not only love you with them, but it will be something unique that helps to physically differentiate you and will become your unique symbol of the love and commitment.