stubborn

At the moment my AA seems to be out of control most of the hair on top and at the back is gone. People here are so brave but i just can't bring myself to shave the rest off, without a head scarf i look bizarre but with it because my remaining hair is so long i can disguise the fact i have any hair loss atall. Am i just being stubborn delaying the inevitable, a few times i get like downy hair, really soft and fragile growing back and imagine it'll grow back to 'normal' but every time i lose it again, not sure what to do would really appreciate a little advice, thanks.

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Permalink Reply by BaldGirlsDoLunch.org on January 21, 2009 at 4:51pm
No, you're not stubborn.

Most hair regrows and the vast minority of us have permanent AU/AT.

This alopecia takes some of us through lots of stages and transitions. Those who have hair that comes and goes have an especially difficult time adapting to the perpetual uncertainty.

The decision on what to do can be made at any time, so no need to unnecessarily pressure yourself to take one action or another. It seems that for most of us we just know when we're the point in time when the pre-occupation with covering spots or leading a lifestyle where it takes over too much emotional energy tips us firmly in one direction. it comes down to how much it becomes a distraction or obesession to you....so that you're not living as normally and un-selfconsciously as you want.

No need to shave your head unless you get to the point where you absolutely feel you want to simplify your life with a vacuum type wig ( must be shaved) or for any other reason that makes things easier and more convenient for you.There are plenty of wigs and toppers you can use that don't require a shaved head at all. If disguising is making you stress that others will find out then that's another issue . And that issue is that keeping AA a secret serves little purpose other than to stress the person keeping the secret.
Permalink Reply by Nants the Rebellion Dog on January 21, 2009 at 5:04pm
I just shaved my head. I had one patch on the left side that was about 3 inches in diameter, and 4 smaller patches scattered about. I could still cover the patches (I have thick hair) but it was annoying to always worry about if anything was showing. I believe it will grow back at some point. If it does, fine. If it doesn't, I have a sassy new hairstyle (wig) and scarves. For me, it came down to this: Is it more annoying to have to care for hair that wasn't doing it for me or to be bald? I decided bald was good. I'm glad I shaved it, for what it's worth. (This is my second day of the new, improved bald me!)
Permalink Reply by Eileen Simpson on January 24, 2009 at 5:15pm
Doesn't it feel good, not to long ago that was me also, but a lot more of my thin hair was gone. I so happy for you and the feeling of begin in control again.

Hugs

Eileen
Permalink Reply by Kevin on January 21, 2009 at 5:59pm
Alrighty now im only 16 here so not a expert with advice but i am a expert on alopecia since ive had it twice. (that rhymed, unintentional.) Now the first time around i did sort of what you did but i combed it over in the back were it was bad and you could tell, but hey i liked to kid myself so i went around looking like a idiot for a year! Now when i shaved it almost 2years later i idk i felt better since i could do what i wanted without haveing to watch my everymove. So i felt better people didnt treat me better but hey thats life so my advice would be shave it off be yourself and dont be scared of what people think cause YOU ARE YOU and no ones ever going to change that i let my alopecia change me the first time around let it turn me into someone i never wanted to be and it destroyed my life. So shave it and you can still ware your scarf and you can still have fun and you can still be you just a new you my favorite saying in the history of man has got to be " I AM WHAT I AM" and no one can change that unless you let them!
Permalink Reply by Nants the Rebellion Dog on January 22, 2009 at 4:01pm
Kevin, you sound like a really together 16-year-old. You are what you are, and that's plenty good enough!
Permalink Reply by Eileen Simpson on January 24, 2009 at 5:17pm
That's right Kevin one of favorite sayings. You sound like smart young man with lots of wisdom and courage.

Eileen
Permalink Reply by Christie on January 22, 2009 at 8:12am
Hi Jane,
I wouldn't say you are stubborn at all! Every person deals with this differently. My patches are spreading like wild fire - and I decided right away that I was going to shave it. It's been more devastating to watch it all fall out. I'm ordering my wig and once i have...it's going! I can't wait.
You on the other hand, are not ready for that - and there is absolutley nothing wrong with that.
You need to do what is best for you. I hate the uncertainty of having this - thus the reason I decided to get rid of it...once it's gone, I no longer have to worry about how much i'm gonna lose...cause it won't be there. Out of sight, out of mind.
I hope you find some peace within yourself, it makes a huge difference.
Permalink Reply by Carla on January 23, 2009 at 2:28am
Jane,

what everyone here is saying is all so true. It takes some time to come to an acceptance of your hair loss issues. I found my first patch around July 25th 08. It took me approximately 4 months to finally accept the fact that what I have was Alopecia although the MDs had pretty much told me from the start. Every day I would watch as my hair would progress from one spot to another. I would curl it, comb it, pony tail it, ... what ever I could do at that moment to hide the worsening hair loss. My final step was going to get my once long thick hair cut into a bob shape... Within 2 weeks I looked like Hulk Hogan on a good day. It was then I decided I would no longer cry about it or be upset and I would cut what was left off. I decided then that I would be wearing wigs and I have to admit that was very strange yet fun at first. I would also tell everyone I know what was going on with me and why I suddenly had long thick hair again. At the time I didnt believe that I would ever be able to deal with this disease but I have realized now that ppl who truly care about me love me for reasons other than my hair and the rest... you know the staring judgemental ones... well they just need to get a life... Period! You will get through this Jane I promise..!!
Permalink Reply by Jane on January 24, 2009 at 9:39am
Thanks everyone your advice has been great and much appreciated believe me, it makes such a difference to hear from people who've been through this. I know that this is my auto immune disease so i should deal with it the best i can, its just hard to keep everything in perspective sometimes. Cheers.
Permalink Reply by Mary on January 24, 2009 at 7:07pm
Jane, this is a very difficult time for you...just know that you're not alone and that there are many of us out here who have been where you are now. Check out the photos on my profile of what was left of my hair the night before I shaved it all off almost exactly a year ago.

Keeping it in perspective is absolutely the best thing to do. I think about friends I know who have cancer or some disabling illness, and I'm grateful that all I have is something that made me lose my hair. This disease sucks, but life goes on and is beautiful. You are not your hair.

Take care and let us know how you're doing.

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