Replies to This Discussion

Permalink Reply by Dom on October 22, 2011 at 12:13pm

"Sometimes if you want to see a change for the better; you have to take things into your own hands"
Clint Eastwood.

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Permalink Reply by kastababy on October 23, 2011 at 3:35pm

I developed alopecia at age 4. I didn't get an official diagnosis until I was 6 years old because nobody knew what it was. I have endured a lifetime of bullying, teasing, and ostracism that nobody should ever have to go through. I never let alopecia stop me from doing anything I wanted to do, and my family saw to it that nobody stopped me from doing what I wanted simply because I didn't have hair on my head.

It saddens and sickens me to see so many people with similar lots as ours simply stop living because of alopecia. It's perplexing and disheartening to see so many people set their entire worth and value in one minor cosmetic piece of themselves. It's the reason why I have begun to distance myself somewhat from Alopecia World and the larger hair loss community - the choking, overwhelming pity party weighs itself down on my own psyche and causes me to second-guess myself; to question whether I'm right or not, and I can't take that - because I KNOW BETTER.

I have come to the conclusion, after 29 years, that even if my hair grew back tomorrow, I would probably shave it all off and continue to be bald - besides not having to worry about the maintenance associated with styling hair and keeping it clean, but it's cooler during hellishly hot Tennessee summers, and I just don't want to be bothered with it anymore. I want a cure for alopecia for everyone who feels that their sole value lies in having hair on their head, and for every child that has ever been diagnosed or will be diagnosed in the future, simply because I don't want them to go through what I did as a child.

Your stance is completely normal and I salute you for it - it sounds as if you have a very strong sense of self (that seems to be lacking amongst most alopecians) that has allowed you to see your particular situation for what it is and that is what really matters - that being bald works for YOU.

I hope to read more of your blog postings - you put things in a wonderful perspective!

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Permalink Reply by Bk on October 23, 2011 at 6:37pm

I totally agree with you! The only hair I truly miss are my eyelashes. Tattooed eyebrows are so much less maintenance than real ones. I have a little bit of hair that grows here and there and frankly, I wish it would just all go away so I didn't have to spend money on razors anymore! I once asked my doctor if there was something that would encourage the hair loss (permanent universalis) and she thought I was crazy. Can't a alopecian catch a break?
I agree with Dom, I would never want to go through the fall-out stage and trying to cover patches...wouldn't wish that on my worst enemy.
Anyway, congrats! You're on the path of acceptance and everything is easier with acceptance!

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Permalink Reply by Bruce on November 4, 2011 at 2:12pm

THANK YOU!!!

I've been dealing with bald patches on my body for several years now and have grown to like the feel of shaving it all off from the neck down. I hate body hair and love being what my naturist friends call "a smoothie". But I'm sick of having to shave it (and I wish the damn alopecia would do something useful and hit my back hair!).

This week I found my first spot on my scalp. Thank goodness I'm losing weight because I would look terrible if I had to shave my head right now (or worse, before I lost the 20+ pounds so far). I shaved my head for a while 15 years ago and liked it a lot (but nobody else really seemed to). So I'm not so daunted at the idea of shaving my head--just pissed at the prospect of having to deal with patches. Fortunately my scalp and beard hair are 99% white, so there will be no five o'clock shadow.

OK, I'm still at the point of running to the bathroom mirror every five minutes to check to see if the spot is real or not. LOL I'm dreading the first time someone notices. Fortunately for me, I'm pretty clueless about people staring at me (I have severe ADD and high-functioning Asperger's) and I'm often unaware of people noticing my hi-tech fake leg (I wear shorts and Utilikilts 99% of the time).

Part of me is more pissed off at this patchy/spotty crap than at actually losing my hair. That and the slowness and the unpredictability. On the other hand, if I was one of the "all falls out in one day" crowd, I'd probably complain about that! OK, I just looked again and if it gets any bigger, it's gonna expose a big brown freckle! (No, I'm not at all self-conscious!)

After I shaved my head for the first time 15 years ago, I stopped having my hair styled after it grew out. I bought a pair of clippers and buzz it myself every two weeks. I would never go back to blow drying, mousse, hairspray, expensive hair cuts, etc. However, when I started gettting bald patches on my body, I started growing my hair long in defiance! After 3 1/2 years it was down to the middle of my back and completely white/gray (think aging hippie). After I cut it off, I went back to the buzz cut. That's when I realized that my MPB had gotten worse and the top is very thinned out. Other than the fact that it's prematurely white, I have always hated my straight, baby fine, lifeless hair.

Yes, I'm on the newbie rollercoaster. And maybe I won't be so brave if/when my eyebrows start to go. But my approach with my body hair has become increasingly aggressive after I went from shaving just the chest and stomach (where the bald patches started) to everything from the neck down. Then I went a step further and decided to commit to permanent smoothness, so I have been using a home laser on the remaining light brown hair, and an epilator on the white hair the laser won't affect. At this point I'm starting to lose track of where the bald patches are and where my eradication efforts are showing results.

Yup, I just checked again and the bald spot on my scalp is still there. Thanks for letting me vent, y'all. I guess I should have put this in the newbie forum. Special thanks for sharing what you like about being bald and especially frustration about just wanting to get it over with!!! I would definitely prefer "all or nothing" on my body and will probably end up feeling that way about my head. But that's subject to change without notice.

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Permalink Reply by karen on October 24, 2011 at 5:45am

Hi,

I am not bothered either way if my hair grows back or not. I have gone through my journey and now I am happy to wear fab wigs, long or short and whatever colour my wigs might be. I love having the baby smooth head.

So I have a new wig company and have a studio at home. my wigs are synthetic as they are so fab, I have had a few sales now and everyone who I have sold to said they love them.

So if you wish to come down and see my wigs, then please feel free, here is my number 07971555051. I am not in the country until this saturday coming, but I have a open evening or you can come down whenever you wish or we can chat online and once my website is up and running you can see the wigs I have for sale.

I am also doing a support group every Monday so you are welcome to come along to that.

Anyway I am sitting in my friends villa in spain havent had a holiday for over 5 years and it is windy and raining just like england, how sad is that only got 5 days here :( but never mind.

lol hot head of hair, oh god yes, it is so nice to throw your wig onto the table when my head gets hot. Lovely feeling isnt it.

So if you fancy chatting more, send a mail. Or send one to my email address karenswigssolutions@yahoo.co.uk or my other home email jasmin_wilkins@yahoo.co.uk or text me 07971555051 karen xxx

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Permalink Reply by Mary on October 25, 2011 at 12:47am

Thanks for the nice blog. I think it's a positive step to reach a place where you don't care, and actually enjoy being smooth. I miss my eyebrows and lashes more than my hair. But, being bald is really the least of my problems and life has gone on. Yeah, I still have dreams where I have a full head of hair - I guess that means I still want it back. But, this is me now, and I do enjoy being "different". I feel exotic and special in a way I never did with hair. Does that make sense?

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Permalink Reply by Lisa Santer on October 25, 2011 at 6:25am

Coincidentally, just yesterday while shaving hairy patches on my scalp I noticed they were much smaller, & found myself cheering, "yay skin! keep growing!" I *much* prefer smooth baldness over the patchy stuff. Over the decades of having my hair come and go (mostly go), I've gone thru all sorts of feelings about it. At this point, if I wish anything, it's for the rest of my scalp hair to go away for good. As you've started to discover, there are some real advantages to being bald--cool, airy, sensuous, low maintenance (possibly), ease of changing your look, non-traditional beauty, turbocharging our paths to loving ourselves, learning to put looks into perspective, . . . Now that I'm thinking about it, I'd love to hear more about the advantages other alopecians experience.

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Permalink Reply by Ilia Reed on October 30, 2011 at 12:18am

I guess there is a lot of advantages. To name but a few: surely low maintenance (apart from shaving the rest - I feel similarly, actually I would prefer to have AU); special looks; pointing at a different sort of beauty; saving money for haircuts (sorry for the unisexes); meeting very special people (like here); and very important: meeting people who became strong and wonderful after going through the whole experience of turning bald - it is not just to see other people here without hair, it is their stories and their strengths that builds up and encourages. Take care all of you!

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Permalink Reply by Karen on October 27, 2011 at 5:08am

Hi,

I love wearing wigs and looking so I can change my look every time. Its great and most guys I have met if they are worth anything love the look, it is so cool and it makes us alopecians look so sexy. I never thought of myself as sexy before but having no hair has made me really look inside and yes I feel sexy now and guess what us girls do not have to shave our legs and arms and have bikini waxes, what we pay out on wigs, well mine are low cost but to have a haircut nowadays you have to spend over £100 in London so really having several wigs is great, it balances out.
Well everyone I am in sunny panama and coming home tomorrow, it is early hours of the morning, so will sign off soon.
x

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Permalink Reply by Bald and Fabulous AKA Terri on October 27, 2011 at 4:18pm

I totally get where you are coming from. Altho I haven't had the other medical issues you have had, I have had my fair share too. After battling the ups and downs of alopecia, I'm fine as things stand now. We all have the right to feel the way we want to feel about this. I congratulate you on your strength

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Permalink Reply by Nachiketa Sanyal on October 30, 2011 at 1:26pm

No, that's just your choice which you can exercise.. I just wish I too could as easily exercise MY choice of having all my hair back..

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Permalink Reply by Ilia Reed on October 30, 2011 at 11:38pm

Hey, I was so afraid of losing my hair. And now I love being bald. It's the power of "normal" societal standards one has to let go. I learned a lot about acceptance here, being accepted and accepting this condition. And discovering the beauty of it. I guess it won't grow back anyway; so this is no real choice. But I don't really want it back. This is my choice. As is the acceptance and: I like to be just one of you baldies out there, you special people, and I am proud of it.

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