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.