Comment by Terrie Goben on September 18, 2011 at 8:35pm

That happened recently to my son. The woman rudely came up to my son asking him what was wrong with his head. This was in a store and she worked there. He is 9 years old. He didn't let it bother him at the time, but later on that evening he had a beak down. This was the first break down he had. I decided to take it upon myself to spread the knowledge of what alopecia it and all the types. My son has alopecia areata. I started an event on Facebook called "September is Alopecia Awareness Month." If you have a Facebook PLEASE search the event. It is public so anyone can join. After "Attending" the event you can invite all your friends. Im trying real hard to educate society on this. Help me spread the knowledge to ignorant people. =)

Comment by Rachel on September 18, 2011 at 8:40pm

:] thank you and your right its just hard remembering sometimes that I shouldnt let it get to me.
but i meant that i dont say it to the people not that i dont like the way i look. Its just when other people make a big deal and have me think otherwise that I need one is when I start to feel bad.
thanks for your comment

Comment by Rodeli on September 18, 2011 at 10:37pm

Sometimes it is hard to deal with people who are nosy or ask out of care and compassion, but it doesn't always make it easier on us. I feel the same way. Sometimes I think of clever things AFTER having to deal with someone. That gave me the idea (that and the fact it is Alopecia Awareness Month) to design T-shirts (mostly) to express things I would like others to know whether it is to raise awareness or having a sense of humor about alopecia or other forms of hairloss or dealing with others perceptions of my hair loss. I call my product line "Balditudes." You can check them out at http://www.zazzle.com/balditudes* I'm still working on more designs and products but I think that wearing something that says something about you can be a good ice-breaker. Let me know what you think.

Comment by Ilia Reed on September 19, 2011 at 1:14am

I like this: balditudes

Comment by Rachel on September 19, 2011 at 10:55am

Hahahah their awesome, I love it! And Terrie I tried to look for your event on facebook but couldnt find it, post a link and ill be sure to join.

Comment by Bk on September 19, 2011 at 12:43pm

Hey Rachel, I struggle with this too. It seems to happen on a daily basis. I'll be having a perfectly fine day and someone will ask me...usually very publicly, in front of a bunch of strangers, typically in a grocery line..."how's your treatment going?" Really? I look sick? Thanks. Then when I say I have alopecia, not cancer, they act almost disappointed...like our "special bond" has been broken. I've actually had a woman say to me, "oh, so you're not dying then?" Why? Would it make my baldness more acceptable to you then?
I don't understand why people think its acceptable to ask such personal questions so publicly...and always loudly. Would you go up to someone with a facial scar and ask how they got it? Or up to someone with a wheelchair or walker and ask why they have to use them? Ridiculous.
I try not to be rude when I'm faced with such amazingly intrusive questions and am all about educating society on what alopecia is, but really, some days I just don't want to be the "alopecia poster child". My mom has said, "well, you bring it on yourself by going out without hair" I suppose she's right to a certain degree, but really? I need to change my appearance-that I am perfectly ok with-to make YOU more comfortable? I don't think so. Annoying is an understatement.
As my friend Monique says, "People; They're the worst." lol

Comment by Terrie Goben on September 19, 2011 at 3:21pm

http://www.facebook.com/event.php?eid=211936208869675 =) thanks

Comment by Cheryl, Co-founder on September 20, 2011 at 3:05am

Hi Rachel, Most of the time I respond politely. Because I realize that alopecia is still not a household word. In fact, just the other day a young girl came from behind the McDonald counter to ask me a question and speak to me. She had tears in her eyes because she had just lost her mother a few months before. I hugged her and then explained to her that I had alopecia and what it was and then asked her about her mother. It was an extraordinary couple of minutes. I gave her my contact information and told her to keep in touch.

In other cases when people ask me impolitely why I don't wear a wig, I tell them that I have no desire to go back to feeling like I am hiding. They get the picture. But, please note that I am not saying that to wear wig is hiding. I am saying that when I wore one, I felt like I was hiding and every fiber of my being needed to escape that feeling. So I made the choice that suited me.

To me it is not so much whether I think I would look better in a wig or not, that is not the point. Perhaps I would to many or even myself. But the real question is what would make me feel more like me.

Comment by Bk on September 20, 2011 at 3:30am

That is incredibly generous of you, Cheryl. I feel imposed upon when the situations you describe above seem to continually happen to me.

Comment by Cheryl, Co-founder on September 29, 2011 at 1:29pm

I think many times we don't see that people asking questions about things that sting us, is that questions are dialogue. An opportunity to learn and teach. The average person tries to detect if it is OK to ask the question. But there are still others that seem to feel they can ask what they want, when they want.

I know if I see someone who may have alopecia and won't make eye contact I will try to non-verbally get their attention. If they don't respond, I will not approach them and respect their privacy.

Rachel you can also look at it as the fact that may see you as approachable and comfortable in your skin enough to approach you.

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