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Comment by Ashley on June 7, 2010 at 3:36pm

Hi Leslee,

I am so happy you wrote your story. I do feel what you are saying. I have been fully bald on my head for five years. And I also wear a wig for five years. Recently I lost all my hair on my eyebrows. (forgive me, my english is not that good, so if I make mistakes in writing......you know why'). Since I lost my hair in my eyebrows, I feel really insecure.....I dont want to hang out with my female friends. Even today I received a message of a female friend, asking when I have time to chill with her. I dont really want to. I am scared of what she will say. So have not responded (yet). I rather not see her. It starts to effect my life in a negative way. I am not that spontanious any more in general. All of a sudden I shut down........At home, with my family I can be myself. A take of my wig and hang around in the house. But inside I feel lonely and ugly.
I never talk about the sickness either, I am so ashamed of it. I know its stupid to think this way. Because I know people do not like me only because of my hair. They like me for me..........But because of the whole alopecia I can not be myself.....I dont like myself with alopecia.......I have been hiding it for so long. I am scared to tell my close friends.

Comment by Carmen Dayhoff on June 7, 2010 at 3:15pm

Leslee, you may not have to bring it up to people all the time. Take opportunities when others bring it up to you. Like the other girls were saying, when you get a compliment, just talk a little about it saying it's a "hair piece" (I've always felt more comfortable with this term than wig) and that you choose to wear it because of the condition that you have. Think about it, how much do you know about Alopecia, the facts? I have to be honest I thought I knew but there was alot that I didn't know. I've recently gotten more books from Amazon and been learning more and more. When you know alot about something it's easy to talk about it. When you tell people about the condition, you are bringing more awareness to society. :) More awareness means more acceptance. :) :) More acceptance is what we all want!! So in short you will be doing society, and all Alopecians near and far, a favor by talking about YOU! :) How great is that?!!

All this is easy for me now but I was where you are now, a few years ago. I didn't know that I was learning to cope better. I was just progressively getting better. :)

I'll tell you a little about me. I've had this conditioin since I was 3(I'll be 32 soon). My parents gave up on Dr's after a few years of not gettng anywhere with them bc it was such an unknown condition, then they moved on to Natural Pathic Medicines, all the while praying for a healing. We went from church to church, evangelist to evangelist to be prayed for me for healing. After a long time of no hair growing, I became very angry with God. I believed in God and felt I loved God, but I was sick of asking for healing and nothing happening so I didn't want to ask any more. And I didn't. I lived my life in a world of denial. "I was fine. My hair was my hair bc I bought it. And I knew SOMEDAY WHEN I GOT OLDER I would just get my hair back." A few years ago, I found that my SOMEDAY came and there was still no hair. I realized that I had to accept that and move on, but that realization STUNK! God convicted me one day that I was hiding and that in my life I had been lying to others. So, as I was involved in a support group for OTHER issues, I admitted how I felt about myself to these people that I knew and trusted with other parts of my life. I also told them about my Alopecia. At that moment, God began a work in me of freeing me from the bondage of hiding, lying, living double. And the people in my support group were very very loving, understanding, and accepting. I cried when I told them. IT WAS HARD!
Almost two years later, Leslee, I am not that person any more. God HAS healed me!! And is still working on more healing, in my heart. I still don't have hair but I have amazing peace about my lack there of.

Today I sit at work, I work as a Nanny, with a scarf on my head instead of a wig. YAY!! That is something I have been working up to for a while. I explained my condition about 2 weeks ago to the kids I work with and told them that this summer that I would be wearing hats, scarves, and possibly going with out hair at all, this summer while we play outside and go to the park. They were 100% cool with the idea. I told them about how my daughter likes to kiss my head and asked them if they wanted to kiss it, they both gave it a great big kiss and a hug! :) It was AWESOME!

Taking baby steps, you'll get there. You'll get where you WANT to be.
It takes courage but we are hear to run things by and for encouragement.

Comment by Mary on June 7, 2010 at 2:54pm

Leslie, I've only been bald for 2 1/2 years, but I know how you feel. I have to say that I agree with the others about hiding...I've been so much happier since accepting that this bald woman is the new me, and just getting on with my life. I haven't lost any friends over it, and my husband accepted me totally (even encouraged me to go out bald.) The day I shaved my head, I sent photos out to family and close friends. I tried wearing a wig for almost a year, and just couldn't stand it. I took baby steps toward being bald in front of other people, and it just got easier and easier. Now, my attitude is summed up by a T-shirt I had made that says "Yes, I'm bald...get over it!"

Here's a blog I wrote about Michael J. Fox and his positive attitude - maybe you'll find it helpful:

http://www.alopeciaworld.net/profiles/blogs/inspirational-words-from

Please stay in touch with us here at AW. ( ;-)
Mary

Comment by Petra on June 7, 2010 at 2:37pm

The more you bring it up to people the easier it gets. Start with your husband - maybe show him who you really are, does your son know that you have alopecia and that you wear a wig all the time? Talk to your family, what are you afraid of?
I know it is hard I still get nervous when I feel like I have to tell people. When someone asks me about my hair (wig) because they like the cut or color and I feel that they are geniune I tell them and like Susan said most people DO NOT CARE. I think they would be more interested if I could givbe them a name of a good hairdresser :-)
I just recently started going out with only a scarf on my head and I have had alopecia for over 30 years (not all of them bald) it has been very good for me to finally have found some form of acceptance with this disease. This is who I am, I can not change it, but what I can do is not have is run my life anymore.
You owe it to yourself to be happy.

Comment by Leslee on June 7, 2010 at 6:55am

Wow, such kind words from everyone, thank you! Yes, I have been "hiding" for more than half my life, but I can't imagine just bringing it up to people. I don't know how to do that!

Comment by Carmen Dayhoff on June 6, 2010 at 5:27pm

PS there is a book advertised on here called The Big Fall Living with Hair loss. It's a really great book. It also may be a great encouragement to you.

Comment by Carmen Dayhoff on June 6, 2010 at 5:23pm

Hey Leslie. BIGG BIGG HUGS to you.
Well girl I would totally agree that 20 years is a really long time to hide. You are a beautiful person. I do understand where you are coming from bc I have always been pretty secretive about my AU. I've had it for 29 years now. I have talked about it pretty openly for many years, but still hated it about myself. I only told who I had to. Some of the attitudes of my best friends helped me though.
Leslie, what do you think will happen if you open up about your hair loss? People are not going to run screeming. They are not going to tell you that you are ugly, because you are not. We did not ask for this or cause this in any way. When we carry guilt, anger, resentment, etc..., it becomes like the largest weight of the world. It affects our personality. It affects our relationships. Leslie, there is a human need in us to "know and be know." When we do not fulfill this need in us, we feel empty and it keeps us from being close to others in our life.
One thing that I learned recently, and God help me, I have struggled with it: the deffinition of insanity is to do things the same way but expect a different result. Do it with grace and baby steps, but If you see that something is not right, try something new. You will most definately get different results. If you still are not getting the result that you want, try something else until it comes out right.
We are here for you. We can be a step in trying something new! Talk to us more and more. You are not alone. Just know that.
MORE BIGG BIGG HUGS to you.
Carmen

Comment by Lisa-Lynn Marini on June 6, 2010 at 4:30pm

Hi Leslie,
I have to agree ith Susan that 20 years is indeed such a long time to hide. I may not have had Alopecia for 20 years (mine just started about month ago) I feel your pain, the mixed feelings.This is why I came on this site, many beautiful people who understand how we feel and we will get through this , sure it will take time but I keep hopeful I WILL.
Chin up sweety we are ALL here for each other!!!

Comment by Petra on June 6, 2010 at 2:46pm

Hi Lesliee, You have come to the right place for support. Hopefully you will find what you are looking for here and in time maybe show your real self at least to your family and friends. Looking forward to talking to you.

Comment by Roslyn on June 6, 2010 at 11:29am

You are definitely not alone in the way you feel. But you have friends now that you can talk to and we truly understand and will NEVER judge you. For a long time my husband was the only one who saw me with no hair. It took me even longer to let my daughter see me. And when I told her I wore a scarve to work last week she was a less enthusiatic than me. Be strong and don't let it get you down.

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