confused with how to react??

i am desperatly trying to stay my upbeat self that everyone always seems to think i am. i am 18 years old and have had no hair since i was 2 years old. i never really cared much about not having hair. i hated when people stared at me, but i just blew it off. however once i turned about 16 i really seems to hit a turn of the worse i started questioning why me? my closest freinds and family started to be like your beautiful withouth hair. and i couldnt imagine you with hair you look better without it. how do you respond to that. do you be all like thank you, or do you take it personally. i know i usually take it as a personal attack like not having hair defines me, that people wouldnt except me with hair. what if i did get hair. the same hair i have been wanting all my life. what if i get it and everyone hates me but i know i will feel beautiful about myself but would it be worth it if everyone else doesnt like it. i have been feeling like i dont know how to cope with this anyone. its driving me absolutly crazy inside. for the past 2 and a half years i feel like my self esteem and confidence has droped so much but i cant let other people see it. i have to be strong . i dont wear wigs because i hate how they feel i hate knowin the hair is not mine. people tell me i am a fake if i wear them. somehow i love being unique and when i wear it and i fit in the crowd it drives me crazy inside and i cant deal with it. i probebly am not making any sence but i just needed to get this out there i just AM GOING CRAZY!! I WANT HAIR. i dont understand why i have to experience this and other people dont. why cant i just have hair of one day! one mont, one year even i dont think i am being to demanding or greedy!

aight well if anyone can share any opions or ideas or insight let me know

stephanie

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Permalink Reply by BaldGirlsDoLunch.org on February 5, 2009 at 11:09am
Hi Stephanie-

I think you'll find some especially good feedback and practical suggestions about this in the AW group called Sisterhood of Women who Shaved Their Heads. Join there and post the same question.

Thea,founder
BaldGirlsDoLunch.org
Permalink Reply by Maygensmom on February 5, 2009 at 2:59pm
The thing is.....you are beautiful, obviously you have beautiful eyes and skin. If you want to wear a wig or find out about getting a hair system, it is up to you. You can ask all day why ME? But you will not get an answer. I would rather that the alopecian hair thief would have stolen my hair and not my daughters. But it wasn't my choice. I have had a hard time accepting that I have no control over this monster. The only choice Maygen and I have are to endure it and get past it. It will always be a part of our lives, but it will not control our lives. Maygen still plays fastpitch softball, basketball, volleyball, and runs track. She participated recently in the One Act Play. It sounds like you need to be reminded that YOU ARE BEAUTIFUL and that it is okay to be sad at times and to cry. That is apart of life. Heck, I cry sometimes because of the stretch marks on my stomach, but then I remember the two beauties that caused the marks, and the tears are taken over by a smile of joy. Find the wonderful things about you. Try something new...a new hair piece, new scarf....have fun doing it. :-)
Permalink Reply by Nants the Rebellion Dog on February 5, 2009 at 4:22pm
Darling girl, I am SO SAD you are suffering. I can't begin to know how you feel, but I can say you are heard and appreciated her on AW. I find the way to feel better is to do something for someone else. For instance, if you visited at a pediatric cancer treatment center, you might see how beautiful your life is. I used to spend a lot of time wondering why this or that happened to me, but now I see it all as a journey in which I am sent challenges to teach me lessons and help me grow. I hope you find peace and happiness soon!
Permalink Reply by Jennifer on February 5, 2009 at 7:56pm
Hey Stephanie, you are making perfect sense to me. I completely understand what you are going through. I'm still going through it. I have bee bald since i was one and havent wore wigs since i was 11. I know sometimes i just want to wear wigs to stop the stares and blend in. But i hate them i wear them for halloween only. Then again i have my wonderful friends tell me how beautiful i am with out hair. Sometiems I just think if one more person tells me how beautiful i am bald i to scream stop. But i know they have good intensions. I makes me wonder if they really think it of if they are jsut saying it to make me feel better. It isnt like i just lost it and i need the pick me up. It almost seems insulting at times. Some friends have even told me how fake or bad i look in hair. I have even had friends tell me they wont hang out with me if i'm wearing a wig. I am pretty sure i will never get my hair back which i am fine with. I wouldn't know what to do with it anyhow. Normally i am pretty up beat and out going. But it is a confidence sucker. Everyone know me as confident and i just want to scream out not im not. I dont want to be stared at i want to walk in the room and no one notice. But this is what i have be delt. will i ever fully get over maybe not. But hey it is my life and I choose to be happy. I have my days were i just want to be like everyone else. But hten again all these people with hair have to fight to be diffrent. We have our way to stand out built in. We can just be us and be happy. I still havent figuerd it out. I think thats why i have so many close friends with alopecia. It is hard to give advice when you are having a simular probelm. But hey at least we both know were arent the only ones and we are not weird or greedy.
Permalink Reply by Tallgirl on February 6, 2009 at 12:13am
So have hair for one minute instead. Imagine the hair you'd LIKE to have, and make a fun project of finding which shop sells that style. Go there with a friend and a camera, don't tell them you won't be buying (say "I have to think about it") and have your friend photograph you in the Perfect Style plus one crazy one...then, develop the film and use the photos for any darn thing you want. At least you can imagine now and then and get it out of your system.
Permalink Reply by GENNY on February 6, 2009 at 1:10pm
Hi Stephanie,

I understand exactly how you feel! I am 37 & I have had this for about 5 years now. I lost my hair earlier in life at the age of 16 & then my hair came back. So, it was around for a long time & then one day Alopecia struck my whole head & since then I have NOTHING. I ask myself that same question "why"from time to time also I still havent found an answer yet other than this who GOD wants us to be. I didnt deal these cards out this is what he dealt to me. I am going to take it & do the best that I can with it & from time to time I do cry also, but it's OK. We need that & then we go on.This is what makes us strong people & that is what we all are! Keep your head up & give thanks that we are healthy & alive. It could always be worse.
Permalink Reply by Pat on February 7, 2009 at 7:54am
I've only been bald in my adult life so I don't know what it would be like growing up being bald. The thing is those around you are used to you hairless and can't imagine you with hair because with hair you look different. I had gappy teeth until I was in my mid thirties, missing my front incisor teeth...my family was used to it, so were my friends. My father has the same teeth. They were less than happy when I had them fixed. My mother says it wouldnt look like dad if he had had his teeth fixed and tells me there was nothing wrong with my teeth as they were. It took me some time to get used to them too! Same with wearing a wig...when I first wore one I didn't look like me as I was used to seeing a bald head and it took some time to accustom myself and family to the new me with hair. I look at it this way, if we lose our teeth we wear false ones, if we lose a limb we wear a prosthesis. So it's the same thing with hair. The bottom line is we have to do what's best for ourselves, and whether that means wearing a wig sometimes, always, or never, we have to make that decision. Maybe it's more important to you to be unique, maybe wearing hair now and then will be more of a fun thing to do. Whatever makes you happy is the important thing.
Permalink Reply by Lori Black on February 7, 2009 at 9:52am
Stephanie, I myself have been AA since I was 12. I am now 36. The hair has come and gone various times and for different reasons. In my childhood I was made to feel that to NOT wear a wig was unthinkable and that I would be an outcast or something due to my "deformity". It has taken many years of emotional growing to see myself in the way I should and so that I could handle it in a way that as you say "makes everyone else feel better". I am still not comfortable going hairless in public, but I have been able (only recently) to accept myself and my own bald appearance. The AA is not all that we are and as some have stated it makes us unique. To discover that we are not "the only ones" has been very helpful to me and I would say that I understand the "I am a young person and I would like to fit in" feelings. I never fit in! I still don't, but I have found that self acceptance will go a long way in helping those around us feel better. Caring for others feelings is a loving gesture, but you are not responsible for how they feel. If you want hair, buy some! If you don't, don't! Accepting the "buying" hair vs. "growing" hair may be the hurdle, but trying on a new style wig always makes me feel as good as getting a new haircut for the average individual. YOU ARE SPECIAL!! I believe the God of Heaven created us that way and we are loved and completely accepted, no matter what!! Blessings to you!! Lori
Permalink Reply by Jane on February 7, 2009 at 3:56pm
I would say that the technology available to us now and impending future should provide some relief. But, in the mean time I would suggest investing in a human-hair wig to transition into advanced treatment. Don’t allow yourself to be upset by superficial effects of your hairloss, it does not diminish you in any way and as we now know, is only a fleeting thing.

The UPenn follicular regeneration treatment seems like it would be ideally suited to you once/as it becomes available.

Take care.
Permalink Reply by BaldGirlsDoLunch.org on February 7, 2009 at 4:13pm
UPENN research currently under commercial investigation by venture capitalists in Follica is in no way applicable to alopecia areata.
Permalink Reply by jackie on February 7, 2009 at 5:53pm
I know what it is like when I can only see the thing that I don't have-it can drive me crazy and no matter what other people say it doesn't make it ok! I hate that anyone has to go through what you are going through. I hate that the society we live in thinks anything of it. I know though that some of us are meant to be teachers. About how we are not the hair or body or thing that we wear...you have been teaching for a long time. I see your pics and you are a beautiful girl. I bet you some of those that are telling you with good intentions that you are more beautiful without hair are somewhere deep down envious of you...look around, I have noticed that there are allot of bad hairdo's out there. I hope knowing that most of us are feeling crazy inside helps you cause if it isn't our hair it is our nose or teeth or big bellies...I am thinkin' about you....Jackie
Permalink Reply by errantpigeon on March 15, 2009 at 6:45am
My daughter just developed alopecia last week.
The only thing I feel able to say right now is that I am sorry that you are feeling this way and you're right. It's not fair. Your feelings are important and valid.
I know it can be helpful for some people at various points in their personal journeys to reflect on how their situation is really 'better' than others, and that they are 'lucky' it's not worse. But this doesn't negate or invalidate your honest and real feelings. I hope we wouldn't say to a person who lost a leg "just think how lucky you are that you didn't lose both legs!" If that person can come to that perspective on her own and that is her way of coping, then great, but I think it's dismissive to make such a comment to someone else and expect her to feel better for it.
So all that is to say I'm sorry and it's not fair.

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