Comment by Tallgirl on August 7, 2010 at 9:50am

If alopecia is genetic, then we here (and millions who don't know about this site) have had it since birth internally...and something just triggered it to show up at some point. You have ALWAYS been the girl with alopecia, and just didn't know it. The Force gives some of us more haired years than others, and we probably could view THOSE years as the surprise, if we look at this from the view from the heavens...

Comment by Cheryl, Co-founder on August 7, 2010 at 11:38am

Nari, I really like the way that you express yourself.

People don't think of me has solely the “bald” person. I must agree that it has become a part of my identity, but I find the more comfortable I get with myself the more people forget about it. Yes when a new person enters my circle they "feel" it. Perhaps they wonder how do I handle it, what would it be like to lose all their hair or could they handle it. Most think that they personally could not, mostly because they don't have to. Most quickly realize that they would have to deal with their self-confidence and I think this is the struggle with alopecia. It brings us face to face with the things that we have learned to put our self-worth in. We then realize that it is not as strong and withstanding as we thought it was.

I don't know exactly how it happened but somehow I learned to love this part of me too. I remember at first looking in the mirror and just crying, wondering how was I going to handle this. Then slowly something emerged. I know my bald looks have not changed since I first lost my hair, so it was not like I just automatically loved what was looking back at me in the mirror. I started working with the look instead of fighting it. When I wore wigs, I made sure that I purchased ones that I loved, not just the ones that made me look like the old me. When I wore hats or went without, I developed my personal style. I just started experimenting and somehow found a way that the new “me” shined.

It is a learning curve, but it can be very gratifying if you let it.

Comment by Roslyn on August 7, 2010 at 11:11pm

It's difficult to deal with but I agree with Cheryl, you just need to find a way to make you "shine" and feel good.

Comment by linda carraway on August 8, 2010 at 6:25pm

Nari I can understand you feelings.Please give yourself a break.Even if other people put labels on us we can stand proud to be living with this.I also have a scar it runs from the top of my ear down my neck,I don"t think I ever thought of it defining me I was just so happy to be well I also have vitolago on my hands and feet,.I have learned to be happy in my skin, bald and a little chunky,my husband and family love me and thats all I need.I just pray they find out why our immune system gets messed.I've got hypothyroid,alopecia,vitolago and entemetrois.all immune problems.I've stopped worring about things I can't change.Love and blessing linda

Comment by Nari on August 9, 2010 at 4:02am

Thank you all so much for reading and sharing your thoughts!

Aimee: I'm trying to talk my boyfriend into cutting my hair... I still couldn't picture going out in public and having a hairdresser see my bald spots. Of course, I know they've seen it all, but I'd still like a home haircut.

Tanya: I guess I was trying to say that people usually pick up on what's unique about a person. I think we can all agree that the majority of women have hair, so one would be less likely to mention it. I do agree with what you said- we should all do what makes us happy; but right now I am still in such shock that all I want to do is sit home and cry and grieve the sudden loss of so much of my hair. Thank you for your reply, you seem like a courageous person, and I absolutely admire that. :)

Cheryl: Thank you for the compliment! I hope you don't think this is an offensive thing to say, but looking at your picture, I think you look beautiful. Your lack of hair just emphasizes your beautiful skin tone and smile.

Susan: Your simple, short comment totally made me smile (for the first time, in a long time)! Thank you!

Comment by Kate on August 11, 2010 at 6:53pm

I have a scar that is very much "me" too! Right in the center of my forehead, about one inch long, and it's been there since I was a toddler. My dad used to constantly ask me if I would like to go to a plastic surgeon. But it never bothered me, and I never went. I don't even see it on my face when I look in the mirror, and I don't think those that know me well see it either.

The point I took from your post is that physical features like scars have the ability to blend into who we are and go unnoticed, since who we are is determined largely by our character, personality, and the way we carry and present ourselves, rather than our physical features. While hairlessness might not go completely unnoticed, even by those that love us, in many ways the idea that physical features start to blend into who we are is good news for those of us that are losing our hair. Sure, the hair loss changes something and makes us look different, but eventually we can all get used to it and see ourselves as who we really are, which is not determined by hair or scars or skin pigment or anything physical.

Thank you for reminding me about my scar, and the ease with which I have lived my life with it. Looking at my scar from a new perspective is helping me realize that I have the power whether or not to see hair loss as a flaw or deformity. My scar is not a deformity on my face, and my bare scalp will not be a deformity on my sense of self. I may not want to be "the bald girl" either, but my hope is that eventually the baldness will be just like the scar, just a minor feature on a wonderful person defined by character, personality, and the core of what makes me who I am.

Thanks for the thoughtful post.

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