The Psychological Effects of NF: When You Look at Yourself in a Mirror

I am a 55 year old woman who also struggles with NF. I was married for 15 years and divorced in 1993. I have 3 children, two of them have NF. I have never even thought about being involved in a relationship because I am so to afraid of what a guy would think. I think the key thing here is I’m afraid of being rejected so I don’t risk it. . Most of my friends don't understand and will say, "but when I look at you I don't even see the NF, I just see you!” I am covered now with tumors and they are now not so easy to hide. Also I have a large plexiform on my left side of my face that is inoperable because the doctor told me I have no muscle tone left only tumor and my face would be "hollow" if I had the tumor debulked. I also have scoliosis like many of you, internal tumors, some on my spine, and all the other typical NF things that increase as we age.

It got so bad that back in 2003 I got fired from a job because my boss told someone I was "hideous" to look at and I had "elephantitus disease". He set out to make me look incompetent at my job and got me fired 3 weeks before my years probation was up. Thank God I had someone helping me between EEO and the Union which I wasn’t even in the the evidence of what he said came out. I had to fight for almost a year to prove I was not incompetent and to get my job back. They kept offering me money and to change my dismissal to a resignation and I refused to give in. Finally when I did win they put me back to work in the file room promising it would only be for a short while. It took me almost 5 years to get out of that job and into another job that is almost as miserable. I am grateful to have a job and to be working; I just am upset at the discrimination I have had to go through because I'm not as "physically attractive" as others, or what society says it.

I mostly try to look on the sunny side of life. Life is good. God is good. Still with all this I know he cares for me and loves me. When I go to the doctor and fill out the papers for a physical, and they ask those questions about sex, I really want to say, “What’s sex?” I’m not sure they would get the humor of it though!

You just wonder sometimes how life would have been if you had looked "normal". I get very upset when I hear people make fun of someone for how they look. Like the press did to Susan Boyle this past week, the women from Britain’s "England has Talent" and now how ashamed they are for what they did. I wonder what would happen to all of us who are physically blemished if the world could see past the appearance and see the heart? Hard to do though if you can't see past your own appearance and just see the heart.

Be encouraged! I agree 100% it is so hard to not feel like the ugly duckling, but we really are swans! At least we do know that God does look at the heart of man and not the physical part. So take comfort in your beauty! But I do agree it is hard, hard, hard in the relationship area and I am a coward, I haven't even attempted and I just tell myself it is okay to just be single! It would be nice though to have someone around to help! It's pretty difficult to try and run a house alone, especially when it comes to maintenance and yard work, because I dislike doing them both and would gladly trade doing laundry and cooking fancy meals for a handy man! But the last thing I want to do is take my clothes off in front of a man and don't even like to do it in front of myself. It's kind of big thing to overcome, knowing who you are and who God says you are to the very core of your being so you no longer feel threatened by your own appearance.

God bless.

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I know how you feel,I know my nf is getting worse.Im also reminded I am ugly by society.I barely watch tv anymore because all I hear is horrible things about people who aren't thin,tanned,blonde,big breastedand perfect teeth.I hate even more so tht people think NF is the elephant man disease... society is bitter,cold,and full of deceit... sometimes I have the impulse to cut.Im so emotionally destroyed over this illness.. I envy others with NF tht are lucky enough to get treatment,help and dr's,but in my town NF is so rare..tht the drs dont know enough to remove the bumps,give me meds or have compassion.I feel like I belong in a circus.. I was pretty when i was younger..but now Im just a waste of flesh to society... I hate tht I cannot be beautiful or never will be... I hate not knowing how severe this nf is.. i hate how my son has to suffer,but my sister and her kid get off free from this.. I hate how my whole life I was behaved,smart,good kid and a great wife to my ex hubby but I get punished with this... I hae how my sister is so evil and hateful and her kid calls my son a dummy and a retard... why does he have to suffer...I hte more I did this to him... its my faullt... maybe I am better off gone..my family never tries to help me with this..they just tell me to cover the bumps...nf has killed my soul.

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Dear LostFairy81

I'm sorry you have had such a hard time. I'm concerned about you because you sound terrible hurt and upset. I can tell that life has not been easy for you and you must be a very sensitive person to be so hurt.

I wish you had someone that you can talk with so you can sort out all the emotions you are feeling - I have spent years talking with therapists and counselors and I do not know where I would be today if I had not done so. It helped me so much to deal with everything, NF, children, divorce, self esteem (lack of) and more. You sound like you are on overload emotionally, and with physical pain also this is a heavy load to be carrying alone.

Is there someone you can talk to? I am worried because you sound like you sound like you want to check out, and listen, you are NOT defined by the NF, it is what you have, it is not your soul! It's a bad rap in life, but you need some healthy people emotionally to talk to and encourage you and help you to see your inner beauty and value. Your son needs you, and the world needs you because nobody was placed on this earth without a purpose.

NF isn't a curse, it doesn't make us less loveable or less valuable in God's eyes. The Bible says that the rain falls on the just and the unjust alike, meaning it isn't something that we have done. It's just the fall of the dice. I'm telling you how angry I was at God when my daughter was born with NF because I was convinced that everything would be fine. I had prayed and totally believed it would not happen. I blamed God, yelled at him, screamed how could he let this happen. Then when I was pregnant with my son I refused to even pray or consider he could be born NF free.

It took me some time to realize that we are on a time line. God is not on a time line, His time is on a sphere. His time is eternal, no beginning, no end. So as dumb as it sounds, in His eyes we are perfected, we are healed, we are whole. It's just that we are on this time line and we can't see it. It may or may not make sense and give you some hope, but it is how I dealt with it and forgave myself and God for two of my 3 kids having NF. I wouldn't trade them for anything.

As lame as it may sound, society doesn't count. They are not the ones who define you. They don't know you, and if they reject you, then they are the one's with questionable character, they are the ones with the warped sense of beauty. If you can even get a slight glimmer of who you are INSIDE then maybe it would be easier. I am not undermining your pain and anger, I just think it would help you to have some hopeful and healthy releases for it. Don't let it choke your spirit and kill your soul. You have far more worth and value than that.

I'm sorry that my post upset you. I thought I was being sensitive but I can see it wasn't. If you contact the team inspire group they may be able to direct you to someone to talk to. There email is team@inspire.com . You can talk to me anytime too. You can send me emails to my home email if you want. I don't go on the computer every day, but I will answer you.

I'm not saying I look in the mirrow every morning and say, "hello beautiful one"! I'm saying it would probably work though, it would make a difference because eventually you will begin to believe it. It may take time, but the power of our words is so important.

I'm sorry you have no support from your family. That is why this message board and support is here. I hope that you can be encouraged and realize you are indeed beautiful. You just need to figure out a way to deal with the anger and pain so you can see who you really are. I'm guessing you are a very sensitive and beautiful person inwardly and have covered this up to protect yourself.

Don’t give up on life. Try to do some things that are fun. Try to watch some comedies, something that can make you laugh, and be happy. We need those good feelings to help us. It's scientifically proven that laughter is the best medicine. I'm sure you probably feel like screaming and shouting, and maybe you need to do that to get the emotional pressure out, but then try and do something that brings you joy.

I'll be praying for you. At some point you will see how this has made you stronger and how much you have to offer to other hurting people because it has developed in you character and compassion. You just haven't seen it yet, but I promise you it is in you.

jilliangail

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i just dont understand why my insurance wont cover my treatment or why I cant find a dr in town tht knows about it...the people who want to help are in other states... and Im in Florida where apparently looks are important,it hurts going out in public and the girls my age make fun of me,stare and laugh or make snide comments... and i scream at my family to help me and all they say is "wear clothes tht cover it" but then rant how beautiful my NF free sister is and how she is sooooooo precious.My mom tried to encourage me to see a plastic surgeon but when I make appts or call the snooty tutty gals on the phone laugh as they try to explain they dont take NF patients..but if I want a boob job or nose job they do tht.... one dr said he cld scaple it off but it wd grow back bigger and possibly bring a friend.It just sucks nt knowing the unknown,to roll over next to my partner and know if I get much worse he is gonna leave me.I want to tell him how i feel but he never has time to sit and listen,with his work scheldue.. he sees im in pain but maybe he rather not notice.. Is there anything I can do about this NF in getting treatment.. no dr in town will help cause they no very little to nothing and keep saying I shld seek out of town care.. and my insurance wont pay cause of pre-existing conditions.I feel like writting Oprah and ringin this to media how many with the illness get denied treatment,or plastic sugery cause of cosmetic and tht this affects our looks,esteem and has made some of us face public humiliation and discrimination..I sometimes feel if this was advertised on nationally tv maybe people wld open their eyes

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we all are prate no mater watt we r told and one day we will have a petit body in haven. and not like watt you see on t.v. it will be so nice .jast reamer you r prate

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I feel ugly too. I don't like to look at myself.

When I was younger an aunt said hurtful things to mee. Not about NF but when I'd scratch mosquito bites she'd tell me, "Don't scratch, you'll get scars and when you get older boys won't like you because of the scars."

Hmmm! One would have to get awfully close to see the scars of scratching an insect bite but the NF bumps are rather visible from a distance.

Friends tell me that they don't notice the "bumps."

Maybe they don't but sometimes I think they're being kind and don't want tohurt my feelings. To me they're as obvious as having purple hair and a large wart on the end of my nose.

In fact, I don't every remember a time without the fibromas.

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Jilliangale, and lostfairy...
Please consider this...
No matter what the book is, a Novel, the Bible, or Koran, the condition of the cover , New, time worn, or soiled, is irrelevant, the message contained within Does Not Change.

For Jilliangale... Regarding finding a soul-mate...
Think of music...
If you 'Play your tune',... The 'words' will join you...
Together you will make "Beautiful Music" ... So Beautiful, that by comparison the Philharmonic Orchestra will sound like children banging on pots & pans!

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oh lostfairy please be storng, i know life suck at times but you need to be strong for your son he needs you!!!
how can you show him hes wonderful little boy if you give up! my daughter has nf1 as do i. she sixteen and went though a time of cutting, thank god shes doing better now. Iam so sorry you are haveing trouble with your family, do they know how much they are hurting you/ Is there anyone you can talk too, that can help you talk to them, sometimes getting things out in the open can help. be stong dont let nf win. hood luck to you trish

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In terms of a dating relationship, I simply have given up. My past relationships have been failures, not b/c of the NF, but due to the fact I tend to be drawn to "fix it" projects rather than strong women. But haven't met any strong women who can look past my NF.

My NF has progressed to the point tumors cover my entire visage. Not sure if I have the emotional bandwith left to handle a relationship. Sounds cold, but the more I know women the more I love my dogs.

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I have been there I tryed to kill my self after someone VERY close to me told me that they couldnt understand why any one would want me with this condition. How could I think a man would love me with all the tumors and all the cry baby mess I had from the pain I suffer from. I broke after that. I belived that person. I didnt want the pain any more mental or physical. I was in the hospital for a week. The only person to visit me was my mom. Not my sister's not my husband, none of my so called friends. Everyone told me that I was stupid (and I agree) . I to am very sick of people thinking you have to be a model to be considered a real person. I have no ins. I cant go see a doctor, I feel my self getting worse everyday. I have a daughter with Nf also, she is 6 years old and seeing docotrs every month. I have a son with a serious problems also. I get no help from any one but my mom with all the doctor appts. for my kids. My husband is always complaing about me. He says he wants to understand but wont take the time to learn. He would rather be doing other stuff. I am one of thoes people that would give you the shirt off my back befor I helped my self. And many people around me know that. What im trying to say is it is very hard to live with this condition as we all know. I know first hand that hurting your self doesnt make it go away. It only makes it worse. Most people do not understand what we have to live with everyday of our lives, and when we cause harm to our selves then they just think we are crazy. We're not we are just tired of being treated diffrently. My marriage is not perfect I do know he would rather have someone with out the lumps and bumps ( I didnt start getting them untill after we were married ) I was cover with them in side. I seeing him looking at other women, I see what we looks at on line. I know the hurtful things he has said to me as well. We just have to try and stay strong. We are no diffrent then any one eles. Thats what I keep telling my self, not that I always belive it. My grand mother made me ready a bible verse once, she said that if some one truly loves you then it doesnt matter what you look like or what happens to you they will be there forvever. I my self dont feel I have that love from my husband but I know I do from my kids. My kids call the lumps and bumps my "SPECIAL SPOTS". My one son said that I have special spots because god wanted everyone to know how special of a mommy i really was. I cryed for days.

"love is patient love is kind it does not envy it does not boast it is not rude it is not self seeking it is not easily angered it keeps no record of wrongs, Love does not delight in evil but rejoices with the truth. it always prtects always trusts always hopes, always presevers love nerver fails."
1 Corinthians: 13

My grand mother told me that the people that make fun of us do not know what love is,. We have to keep hope and try to make the best of what we were given, I sit here with some dout in my head as many will, but we have to try. We cant change who we are. I hope this helps. I know how you all feel. I have those feeling to .

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My heart breaks for those of you who have suffered such cruelty from others.
I have a "friend", who whenever we get together, talks about how ugly she is, and how if she could just get a boob job and tummy tuck, life would be great for her.....GOD if she only knew.
IGNORANT people have no place in my life.

Because of that, I am virtually friendless now.

I have removed the negative jackasses who bring me down.

If that means Im alone, so be it!

I do have a wonderful hubby (10 yrs married) who sees past the bumps......just as I see past his amputated leg.
It's so important to surround yourself with positive people.

NF sucks....but that just makes me work harder at who I am inside.
It takes work to see someone from the inside out-

I believe my purpose here on Earth, is to teach and inspire my children, to become the type of people who dont judge and who love and accept people for who they are.

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