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do i have the right to feel to feel bad for myself????

selected1
  • By selected1
  • Posted July 2, 2009 at 2:01 pm · 19 replies
  • Shared with the public
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i am a 35 yr old woman with nf and sometimes i just wonder why. Why am i the only other one besides my dad who has it? Why do they get worse? why are people so inconsiderate or cruel about it. I have them on my body mainly my torso and back and some going down my left arm a few on my legs. The one that bothers me most is on my face on my right eye and its under the skin which gives my eye a swollen look i always have to wear my hair in my face and i use to get teased all the time about it but when i hear about all the other conditions that other people have i wonder if i really have the right to feel bad for myself and if so should i get it removed?????

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Cancer Pain Depression

19 replies

Basenji53

I know how you feel. The teasing about my NF started in first grade. I now have thousands of tumors from head to toe.

If a tumor is causing you problems or if removing it would make you feel better about yourself have it removed.

I think you have a right to feel bad, but I urge you not to. Feeling bad about yourself has no useful purpose.

It took me many years not to feel bad about myself . Now I thank God every day for those things that are right in my life.

As you said, many people have it worse. Those who overcome their problems can live happy and successful lives.

A wise man once said pain is inevitable, suffering is optional.

Stephan Hawking has been confined to a wheelchair for over 30 years but he considers himself lucky.

Good luck and may God bless you.

GirlA

I have NF1 also and its really hard at times not to feel bad. Have numerous problems from NF besides
the bumps: pain, stomach problems, and more-
a tumor on my right eyelid=two surgeries on it= and it
comes back again. I try to be cheerful=life comes
with its ups and downs. Hang in there.

aumsville

I think you have the right to feel whatever you want to feel. When I feel down about my son having NF1 I sit down and think: Is this productive? I always come up with the same answer: No!! being sad or feeling bad takes the joy out of your life and those around you. Take a moment to think all of the positive things surrounding your life and enjoy every moment you have with those you love :)

sweetiecat

Some people are just inconsiderate. I too know this is hard but, try ignoring them. If think it would make you feel better about yourself then have it removed if you have the insurance and/or money. I am trying to educate the people in my life now about nf and some of them seem to not want to know or be bothered with it. I feel like they don't wnt to bother with me because of that. Do what you feel would make you happy. As long as it doesn't hurt anyone else then who cares? Good luck! NF is hard to deal with.

colliefan

You have the right to feel whatever way you want regarding NF. The larger question is does "feeling bad" about it accomplish any good? Depression seems to run in NF patients and there are many meds that help counter those feelings. It could be that NF causes an uptake of seretonin and those meds blocks the uptake.

stumpythebumpy

yup we all have the right to feel bad and get down right pissed off!...these days i am trying to embrace my NF and am comfortable with being different. after all...........it takes one look at any popular magazine or television for that matter to see that everyone is trying to be the same trying to look and be like the next guy. yes i was teased all through my school days....kindergarten - 12th grade...made a few friends along the way. but was mainly the outcast.....only people whom really "accepted" me were the "hoods" and "stoners" lol.ya know, my fellow outcasts of society....lol. i grew up with a huge apple sized tumor on face and my left leg was severley deformed.and of course the hundreds/thousands of tumors on rest of body.beat cancer 2 times.widowed at the age of 21 (she was murdered,long story) been dealt alot of bad hands in life....but here i am still kickin!..we all have bad days, but i suppose it makes you stonger......try to savor the good things in life.even the small things.

NFinNO

NF-1 causes serotonin uptake? I hadn't heard of that before, but last year at an environmental medicine clinic (for multiple chemical sensitivites) they found that my serotonin levels were low. If NF does, indeed, cause serotonin uptake, maybe I've got an answer to at least some of my problems. Do you know where I can find out more?
Thanks.
NFinNO

mellymel

Hi
each person that has replied has said it all. Its not easy for me. I live in NY so im stuck using bus, Trains other transportation. people stare at me like im a alien. When there's a baseball game (yankees). trains are packed super packed people hate to rub against me iv had people stand away from me and get up because they dont want catch what I have. Ive had people make fun of me. I understand you in full sometimes i feel if its worth living like this cant have kids bcause im so afraid theyll have it and then having to live like I do. But On occasions I feel my medical issues are nothing compare to people who cant see or hear or walk children that are dying without even living the good parts of life that I have.

I

GirlA

I live in Chicago.I have the same problem.

mellymel

BY the way I forgot to mention Yes you have right to feel

tearsrfalling

You do have the right to feel any way you want. I have been through alot of teasing and heard comments such as I would never date an ugly cripple (I also have Pseudoarthrosis in my Right leg, it is shorter than left and I need a brace) to "OMG, Is that catchy"
and 1 guy had the nerve to tell me "I would be ashamed to be seen in public if I were you"....he took it a little further though, he came & touched a tumor on my face, and I was already not feeling "well", so I said, "Oh, I wouldnt of did that if I were you, you can not catch this disease from me normally, unless you touch one that was bleeding/open. That is why I am on my way to dr so if you start itching inside your body you know your getting it, if you start seeing tiny bumps that look like pimples get to the dr, and the bus driver start telling him that his sister-in-law has NF andyou dont catch it from the air & it is inherited unless they are open. That poor guy start getting anxious and saying he could sue me, I said NO, You touched me, and the driver told him he has it on camera that he touched me, man got off bus yelling. The driver turned to me and asked since when did NF, stand for "Naughty Female" the people on the bus started laughing, I said only when they piss me off.
But I do a lot of volunteer work, despite my depression, I do not want this disease to beat me, so I do waht I can to help others

NFinNO

I found an old note that says something about NF causing serotonin uptake. That sure hit home, because last August at an environmental medicine clinic I tested low in serotonin!
NFinNO

PVA

tearsrfalling

I love that bus driver! ;-)
He is so cool playing along like that. I know for a fact that if you plant a seed like "if you start feeling itchy...." the guy will definately itch.
That played out beautifully.
We all have a right to feel bad. I hate having this condition too. It down right s--ks! If we want to get it out we can just vent here on this site and just move on. No else will listen to us.
Yes be thankful for what we do have.
Knowing that others have it worse off than I do just makes me feel bad for them. But I am still thankful that I can walk and see (even though I need glasses).
I also have been praying to God to help me see myself as he sees me. A child of God.
God Bless you all.

JLEE2

I would love to meet your bus driver. He desrves a medal. And I love the characterization of NF meaning "naughty female". You have just given me a whole slew of options to consider! Thank you! As for the twit - great come back - and I know it is bad karma but I hope he breaks out in hives, just for the drama.

guilty_spork

At the risk of being reprimanded again for off-color comments, I'm gonna share my oppinions. I have suffered horribly at the hands of MANY people all my life. Church abuse, school abuse, family abuse. Ever had your head shoved in a dirty toilet filled with human waste or been "exceorcised" at 6 years old? Teachers called me a retard in front of other students and encouraged them to follow suit. None of this was actually NF related but it was just as horrible and turned me into somone with a unique view of people and the world at large. What NF did leave me with from an early age was the wisdom of life's finiteness and temporary nature. I live by the philosophy that LIFE is WORTHLESS and LIVING is PRICELESS. If you cant figure out what I mean by that, just stop reading this right now. I dont value my life or anyone else's. I value LIVING. The love, the happiness and laughter that life can bring is where the true value of existence lies.
That being said; Cruelty and mallice are all too common traits of many people these days. They have no joy, no love, no empathy or compassion. The only thing akin to happiness they know is the sense of superiority that harming others brings them. Bullies, preadators, abusers, liars, thieves. All take thier emotional sustainence from the piece they tear from us. Vampires, feeding off the good will and happiness they see in others. Devourers of innocence. Corrupters of passion. Somthing deep and frightfull sleeps behind these eyes that have cried oceans of tears at the bloodshed and suffering I see at the hands of these monsters.
I study science, weapons, tactics, chemistry. I never forget. Never forgive. When I was being beaten to a bloody pulp on the bus in 5th grade, in the back of my head, I knew that someday, I would become terminaly ill because of NF complications. Outside I cried out in pain. Inside I cackled with the joy of the vengence I sewed the seeds of with each punch and kick to the face. We all suffer. Noone is immune to pain and ridicule. But never forget that the creatures who treat others in such a way are devoid of the qualities that define us as human beings.
Feel bad. Mourne for the loss of innocence and faith in others. You have EVERY right to feel many levels of emotion over what has been done to you. This is all just my view on things but I feel horribly insulted when people tell me to "just let it go" or somthing like that. Why not ask me to forget my whole childhood. The things that made me who I am. We all know that's not realistic. Take all this for what its worth. I concider myself BLESSED to have come to understand the true value in humanity, kindness and living. Wisdom can only be gained through trials and I value my suffering as much as I value my loving nature and sense of humor. However... Someday the words I both long for and dread will tell me that my time is almost up. I am a fatalist. The years of worrying, wishing, planning and resentment will be at thier crescendo. Read whatever you want into this. The sad, lonely little boy will cry tears of copper and lead and sob in thunderous booms that shake the heavens. The joy and release and extacy of a life of suffering avenge... A final moment of heaven in the tears and gnashing of teeth of the fallen mighty. Ok, ok, ok... Im pretty sure that I've alienated and disgusted somone by now. That is not really my intention. I trully appologize if my oppinions are inflamitory. Please understand that I'm not you and our experiences are unique to each of us. I have serious PTSD and a victim complex. I'm not sorry for what I said, just that it might seem unpleasant to somone who hasnt shared my experiences... shoot. Even some of my family with similar experiences think I'm nuts. Simply put. Human beings are full of compassion, love, empathy and understanding. We should not be defined by our DNA but by our behavior. Those who are terrible to others deserve nothing but the worst kind of end to the suffering they force on others. Never lose your sense of love and kindness. Never lose your hard earned strength you gain from overcoming the pain they cause you. Never forgive. Never forget.

colliefan

People can be kind or cruel. How we respond is up to how we process how people treat us; and this process is based on how we see the world; or, in other words "our belief system." The circle is completed in that our belief system will be the basis how we treat others.

colliefan

One thing I failed to include that I was sexually, emotionally, and physically abused by my missionary father. When he died we were not on speaking terms and I had to be dragged to his funeral.

Over time, the pent-up anger burst and I fell into clinical depression. It took the aid of both anti-depressants and my faith to process the abuse and move on with life.

The one attitude I despise the most is the victim mentality as it doesn't help the person holding that view or the ones in his/her circle of influence.

guilty_spork

Take everything I say with a grain of salt. I'm slightly disscociative. Today I feel differently. At this moment anyway. My reasoning and thought processes and personalities take turns at the wheel. I'm like a grab bag of fun. I dont know why I say all that stuff. Sometimes I dont remember typing it. Sometimes I get scared when I realize the tings I say and do.

caringfriend

Yes, it's okay to feel bad, but it's better to say "I refuse to let this get me down" "I may not be able to fight this condition, but, I refuse to let it win"

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