After being stuck in the headspace all day, I felt I needed to get this out there.

I'm finding it difficult to accept my appearance as it is.  Typically it will be a soft whisper in the back of my mind, easily downed out by the noise of my life, but from time to time I come out a a loud scream, blocking any attempts to concentrate on anything else.

The thing is that is have no clear ideal of what I really want.  It changes to differing degrees, from wanting an ambiguous appearance to full out female - despite not identifying as female any more than I identify as male.

What bothers me most is that accepting my appearance was one of the first life skills that I had to learn. Neurofibromatosis deformed the right side of my face, and I've always known that it will never be completely corrected. The first surgery I had in attempt to improve things at age four taught me that.

As I've grown older tumours have appeared on my skin and more are certain to follow.  There are time that I will see my face in a photo at an angle I'm not accustomed to, or every now and then I'll find a new tumour or see the ones that are more hidden when the light hits them a certain way.  I'll be hit with a wave of despair but after and hour or two tops, I'll be ok.

This is somehow different. I can't seem to let this go. It shouldn't be any different than dealing with NF, yet it is. 

I'm currently still on the mission to find out which growth syndrome I have, but I have various issues that have caused me equal distress. For once, I have every single facially clincial trait of Acromegaly, proven by x-rays but not by official diagnosis. The severe brow bossing, the huge nose, the swollen lips, the lumpy chin, extremely dense facial stuble, a very wide square jaw, and extreme facial oil and redness. I look like a monster, I really do. About every single facial trait that is the exact opposite of beauty and womanhood, I have it.

So far, I have have two nasal surgeries, both which left my nose severely disfigured by surgical incompetence and malpractice, and my nose is now damaged and sensitive to the point I have to wear a small bandage on it permanently. To ever even slightly resemeble a girl, I need $18,000 worth of surgery and treatments; mainly a brow bossing procedure, a nasal touch-up, skin treatments (hormone therapy and required therapists/endo visitis), and possibly fat/filler injections for my lumpy chin, adding voice therapy and hair removal treatments to that. So, so many boys are born so much prettier than me with absolutely none of the things I have to spend around $18,000 on (Justin Bieber for example could 100% pass as even as a supermodel girl.) I'm not even about celebrities, %50 of the boys I grew up with were simply born without the extremely masculine flaws my potential Acromegaly gave me.

Basically, Acromegaly is when you age extremely beyond your years; I'm in my mid-20's, and people mistake me for being in my 40's. My body has simply aged that much, especially craniofacially. It's extremely distressing, and it happened to the person who hates it the most.

About you having tumors and a deformed face and such, one positive is that according to study, people are at least more respectful toward those who have obvious deformity or handicap, much more than they are to people who don't look exactly deformed but are merely ugly. If you do look fairly deformed, chances are people have actually been nicer to you growing up than they have been to me, as Acromegaly isn't well known at all and merely makes a person look like they're incredibly masculine (which is actually a growth syndrome, just people don't see it as such out of a lack of education.) However, its really the pain of not having a sexual lifestyle and a "popular" lifestyle that's probably what's giving you the exact same pain I'm going through (as even though people are mean to me, it's really lonliness that gets me down), and like me, the inability to pass or look like the gender/appearance you prefer.

What I say is that surgery has come a long way since you were 4, and I would not doubt that there are procedures out there that could minimalize your symptoms in at least some sort of way. Or, as I promote doing myself, if your deformities are truly hard to look at, both for you and other people, wear a cool scarf wrapped around the area, or even wear a decorative mask. There are times where I've simply had to put a mask on to keep from thinking about my extreme appearance, and it works wonders for the confidence; the cool thing about confidence is that if you're truly confident, people may like you even with a weird decorative mask on.

RhinoP,

Thanks for your reply.

I hear what you are saying, and I've seen you posts before.  For someone wishing to transition and to be afflicted with your condition, it must be hell.  My heart goes out to you.

For me, the NF on it's own isn't that big of a deal.  I know that people are generally nice to me in regards to my appearance, despite the occasional person staring at me like I crawled out of some level of hell or even having one child start crying and screaming upon me entering the room. (honestly I think the kid had some emotional problems, I don't look that bad  )

I know that surgery has advanced over the years.  The one I had in '84 was one of three ('92 and '95) that I've had that were done in an attempt to correct this.  I'm currently in consultation to have more work done.  I am also very grateful that this is all covered by provincial health care.  Were it not for that, this would have been all out of reach for me.

As for the tumors, they are coming out with new ways to remove them by CO₂ laser or electrodesiccation.  I plan to have my facial hair removed one I have the funds, so there will likely be light and/or electricity in my future no matter what issue I'm dealing with. 

I explored the idea of covering my eye in the past, but came to realize that if there would be one thing that would be unacceptable to me would be to hide myself.  This is not to criticize you solution, it just doesn't work for me.

But getting back to my original post, I'm having trouble pinning down what I would want to look like in regards to masculine/feminine traits.  It all seems so self contradictory, and I can't understand why I can accept my NF, but why I can't get past my appearance in regards to gender.

I think that...your facial tumors aren't something you can actively do something about (right this moment anyway...) but gender expression feels like something we should grasp, understand, be able to fix...*right now* and the more we explore it...the slipperier it can seem! (at least..IMO)

I'd suggest just trying things out. Buy a bra and stuff it. Feel that. How does that feel? Buy a skirt and try that out...how does that feel? Mix and mash looks. I perfer male tops with skirts, or female tunics with mens pants. Works for me. Will it work for you? Don't know. The act of trying things...even when those things didn't work for me...the act of trying, and moving forward and trying to learn more about myself and my gender often made the angst subside some. HTHs

Thanks Sevan,

Quote from: Sevan on September 26, 2011, 10:49:13 AM
I think that...your facial tumors aren't something you can actively do something about (right this moment anyway...) but gender expression feels like something we should grasp, understand, be able to fix...*right now* and the more we explore it...the slipperier it can seem! (at least..IMO)

I couldn't agree with you more.  I think the problem lies in that I get too caught up in trying to figure out the final solution to my gender expression and losing sight of the details.  I think I need to focus on reversing my approach to this.

Ironically the NF issues seem to be the easier part.  Fortunately I only have about 12 tumors that are consistently visible with only one appearing on the left side of my chin. The rest are distributed throughout my body. It was one big one (plexiform) that caused problems on the right side of my face and I am in the process of consulting with a plastic surgeon on that. That will take time, but the chance for improvement is in sight. .

While I do address these issues separately, they do tend to intersect. Namely in that because the one thing I wanted as a child was to be "normal" in every sense of the word (yes, I realize the fallacy of the concept  ), it's caused me to suppress myself. It's when this habit of suppressing myself and my desire to express myself collide that problems ensue.

I have done some experimentation so far, with varying degrees of success in how I feel, and I know that I will need to continue to do so as I give up my old ways of thinking.

I just needed to be reminded of that.

Glad to help, however I can!

The biggest difficulty in trying to find ways to cope, ways to succeed, maybe even ways to transition...as an androgyn or any non binary...is that (IMO) the target seems to move on occasion.

We need to gently learn to accept the non finality of it. (SO SO SO hard for me!! Srsly. So.) My mantra...my reminder...is that if it works today, that's good enough. It may not work tomorrow..but tomorrow will worry about itself. (Very stress inducing for me...as I'm on hormones which aren't exactly a *today* kinda fix. Thankfully...those have been helping me since I've been on them, for almost every single day I've been on them...so there's that.)

When we're in pain we want the quickest, shortest answer to get out of pain. It doesn't matter what the pain is called...I've found that to be a universal truth.

*hugs*

I get treated so badly by everyone my age, everyone always judges me as goofy, haggard, ugly, a loser, and just plain out in no way sexy or cool. People always seem to justify it by saying it's more to do with my personality, but any "loser-ish" personality traits I have (I don't have many) are only the result of people universally judging my appearance anyway since a very young age, never having been a popular kid in school no matter how hard I tried, never even having true close friends or experiencing anything almost every single teenager in today's world does. Really sucks, because I have such an extreme sex drive, and I am only sexually attracted to people who plain out are very sexy.

One thing that may make you feel better, is at least for me, as long as a boy had a very nice facial structure and had an obvious underlying sexual appeal, I would not care a bit if he had burns or tumors on his face, or other types of skin/deformity issues, I'd still most likely find him attractive. For me, having such an extreme progression of secondary male traits (I've basically aged 20 years ahead of everyone else in every possible way except wrinkles, I even have bone and spine problems that men usually don't face until after their 40's, and I'm only in my mid-twenties.) really is such a problem I want to fix because it directly prevents me from looking like a woman, but I understand how it would feel to not want to hide a personal deformity; personally, my bottom teeth are crooked as heck, but I've never had a problem with them.

For me, hiding my features never was shameful, it's always been a big experiment and influence. I guess its easy for me to do, as I usually belong to social circles that feature young adults with experimental style choices; tons of people I used to know would go around wearing weird big hats, masks, or just plain weird outfits around in public. All the main characters in my screenplays tend to wear a mask for some reason or another, and overall, I like experimenting with the science behind what people judge more positively; an attractive, interesting mask, or a haggard, ugly natural face. I guess if anything, I see no real reason to be proud of any sort of deformity or health issue, which kinda sucks for me.

Rhino,

Have u ever noticed that over 95% of your posts, no matter the context of the thread or its subject, you always post the same thing; which is you putting yourself down?

You need to think more happy thoughts

Quote from: RhinoP on September 27, 2011, 10:01:46 PM
I get treated so badly by everyone my age, everyone always judges me as goofy, haggard, ugly, a loser, and just plain out in no way sexy or cool. People always seem to justify it by saying it's more to do with my personality, but any "loser-ish" personality traits I have (I don't have many) are only the result of people universally judging my appearance anyway since a very young age, never having been a popular kid in school no matter how hard I tried, never even having true close friends or experiencing anything almost every single teenager in today's world does. Really sucks, because I have such an extreme sex drive, and I am only sexually attracted to people who plain out are very sexy.

I count myself lucky that I did have one true friend in High School that did stand up for me, it especially helped that he had a strong influence in the politics of my high school.  Basically no one screwed with him and his word was final.  To this day I consider him to be like an adoptive brother to me.  He was someone who saw past my appearance and odd behavior and accepted me for the decent person I am.  There a lot of people like my friend, but I know that sometimes it can seem like they don't exist.

Quote
One thing that may make you feel better, is at least for me, as long as a boy had a very nice facial structure and had an obvious underlying sexual appeal, I would not care a bit if he had burns or tumors on his face, or other types of skin/deformity issues, I'd still most likely find him attractive.

I've had a few women show interest in me but either there was either no chemistry, or the relationship would fail when I would not be able to take the "male lead".

Quote
For me, having such an extreme progression of secondary male traits (I've basically aged 20 years ahead of everyone else in every possible way except wrinkles, I even have bone and spine problems that men usually don't face until after their 40's, and I'm only in my mid-twenties.) really is such a problem I want to fix because it directly prevents me from looking like a woman, but I understand how it would feel to not want to hide a personal deformity; personally, my bottom teeth are crooked as heck, but I've never had a problem with them.

I'll admit that my male secondary traits aren't that bad, especially considering I identify as non-binary.  It's when I'm feeling dysphoric that my mind starts to exaggerate things.  That was the genesis of this thread.

Quote
For me, hiding my features never was shameful, it's always been a big experiment and influence. I guess its easy for me to do, as I usually belong to social circles that feature young adults with experimental style choices; tons of people I used to know would go around wearing weird big hats, masks, or just plain weird outfits around in public. All the main characters in my screenplays tend to wear a mask for some reason or another, and overall, I like experimenting with the science behind what people judge more positively; an attractive, interesting mask, or a haggard, ugly natural face.

I would never want anything I say to suggest that you should feel shameful in what you do.  I think your approach is rather creative, and in the context of your social circle that you describe it seems quite appropriate. 

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I guess if anything, I see no real reason to be proud of any sort of deformity or health issue, which kinda sucks for me.

I'm not proud of what my NF.  What I am proud of is the strength I have gained from dealing NF.  I know that there are people who respect me for who I am weather they be family, friends and co-workers.

As for the people who want to judge me based on my NF, **** them!

Quote from: Annah on September 28, 2011, 12:46:01 AM
Rhino,

Have u ever noticed that over 95% of your posts, no matter the context of the thread or its subject, you always post the same thing; which is you putting yourself down?

You need to think more happy thoughts

@Rhino,

Is there truly a pattern to this?

How do you see your self as a person, ignoring the physical for a moment.  When you look at who you are, not what you look like.

If you can't see yourself as being a worthwhile person, others are going to have a hard time too even if you were to meet every standard of beauty.

The thread is 'Accepting my appearance'.

Doesn't matter what % of what a person is posting. I don't see it as anything other than a very good place to just get it out there on the table of discussion. If anyone doesn't approve, they should be off doing something else. This is a very serious discussion that isn't going to have a immediate solution. It is however one that lets those involved to really discuss and understand just what it is that is important to them. It's one that the answers to should be as serious as the poster is asking for, if there is one. A serious discussion that is looking for serious answers.

Ativan

Namely in that because the one thing I wanted as a child was to be "normal" in every sense of the word

sigh ... me too and I'm not a child but I still wish that more then anything. I know people here embrace their not-being-normal which is freak'n beautiful but I can't do that yet. Inside and outside is just too 'different' for me to accept atm

Bury that outside in the inside, back of the head. Now, let the inside be on the outside. It is edited beautiful.

Ativan

Quote from: @ivan on September 29, 2011, 10:08:49 PM
Bury that outside in the inside, back of the head. Now, let the inside be on the outside. It is, edited beautiful.

Ativan

Sort of the approach I've taken to in regards to my NF. Now if only I can get more of the inside that I buried in the back of my head on the out side, there will be room for the rest of the out side inside there.

Now the back, and sides of my head are starting to hurt.