Comment by Kristine on March 8, 2012 at 1:11am

Good question ! It would make my day if someone came up to me and said "Alopecia ?" I would love that and we would break out into a Glee dance ! One would think right ? I worked in Yellowstone national park and there was the coolest girl that also had alopecia and we were friends, I worked for her but we both refused to bring up the alopecia topic elephant in the room to each other.Kind of funny two bald chicks in a room together and we are busy talking about bears and bisons not hair. Finally one night at the pub after one to many tequila shots I finally asked her if she had alopecia and she said yes. I gave her a high five. And told her I would love to sit down and talk about hair one day with her. We never did it. I respected that. Damn I thought, we could of had some amazing conversations and we just never did. I was ready but she obviously wasn't. Thank goodness for this site. Right ? I can relate to your wigdar. lol. I hope, I take that back I long for someone to ask me if I have alopecia. I say ask. Let's get the word out. It's not a bad word. I'm so tired of the shame. I wish it was me you would have seen. I would of recognized and we would of danced the night away. Till then I'll keep an eye out for you.

Comment by Michelle on March 8, 2012 at 7:01pm

Sounds good to me Kristine!

Comment by Kimberly on March 9, 2012 at 5:58pm

Interesting question....In fact this week I had a lady (whom I know) come into our store - we started talking and she said, "I want to ask you a question." I was like, "ok". She said, "I have a friend with cancer and she's starting to lose her hair and I know you have alopeica (she couldn't pronouce it correctly) and so I said, "alopecia, and yes I do" and the conversation went on and on.... talked for probably 20 mintues, and for me, I really don't mind. If I can help someone else, I'm all for it. Another thing, to know you're not alone in the world dealing/coping with this and to be able to talk to someone else dealing/coping with the same thing I think is awesome. It's kind of like therapy. LOL Personally, I think it makes us stronger. (If that makes sense) Looking forward to see what everyone thinks...

Comment by FANCY1024 on March 9, 2012 at 11:44pm

I wouldn't mind someone asking me about my Aloepecia as long as they weren't rude and hurtful about the way they asked about it. I'm very private about my AA and I do wear a topper intergrated wig. So, I would probably be alittle upset at first that they could tell I have AA but once over the shock, I would be fine with it and enjoy the conversation. My hair loss is such an embarassment to me. Having someone who's discrete to share my thoughts and feelings with would be nice. Hugs Di

Comment by Kimberly on March 12, 2012 at 2:11pm

Hey Fancy, I understand - it use to bother me too years ago. I was ALWAYS worried about how my hair looked? if my spots were covered? etc etc.... It wasn't until after finding alopecia groups on interent, going to my first NAAF Conference that I "came out" so to speak. It inspired me to do an article in our local newspaper about alopecia, had a picture of me with my wig on and without it on. The circulation of our paper is around 80,000. That was a MAJOR step for me, but it also lifted a huge burden I carried, and gave more openness for me - and a few years ago our church did this thing they call cardboard testimonies. I partcipated in that a couple differrent times, the first time I wore my wig carrying a sign about me having alopecia and length of time, and then on the other side, how God is greter than any problem I have but the second time I did it, I went out without my wig on - slick as a cue ball -again, another big deal for me. nervous? yes, my thoughts were "what are people going to think of me?" "what will they say?" but you know what, it doesn't matter, this is part of who I am, and I am so very blessed in so many ways. I have been AU for the last 15 years of having alopecia, and the first 15 AA. This has really lifted a burden and has given opportunity to talk to others with alopecia and several women have come to me with cancer and dealing with hair loss due to it. :-)

Comment by FANCY1024 on March 12, 2012 at 4:07pm

Hey Kimberly, You and everyone else on this website who have “come out” are truly an inspiration. I’m so glad you’ve reached this place in your life and still feel good about yourself. I don’t think I’ll ever get to that place!! But who knows there are miracles! Thanks so much for sharing!!! Hugs Di

Comment by Cindie on March 13, 2012 at 10:02am

Wow, Kimberly! I am so impressed by your bravery!!

Comment by Michelle on March 14, 2012 at 9:20pm

Sounds good Aimee. I was thinking about saying....I hope you don't mind me asking this but I noticed you and was wondering if we might have the same thing. I have alopecia.... Hope I don't get slapped. Lol!

Comment by asdf234 on March 31, 2012 at 11:08am

It might be less threatening if you approached with "I have alopecia and I was wondering if you had it to". Personally I would love that.But I found the feeling of hiding was the most painful part of this, so I tell everyone who asks.I think older people are more compassionate about imperfections. My heart breaks for the children, teens and young adults with this. There are so many bullies and clods at their age.

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