How do I come out with alopecia?

I have struggled with alopecia areata my whole life, well since I was three. Now at 24 I feel that I have made peace with it and accept the uncertainty of my appearance. In the past few months I have developed totalis. Although I have accepted it and am trying to move on, my husband and 5 year old daughter do not know how to. My husband tries to be supportive and not affected by it, but he is and I can tell. It usually comes out in weird places, like critiques of my dressing, or his sudden physical attention when I am wearing a wig, like all the sudden he sees me again. My daughter is scared to death of me going out in public with her without wearing a hat or wig. I don't know how to deal with it. I know for them this is new and unexplored territory and scary. They try to support me, by telling me the new wig looks nice or that hat looks good, showing me possible dietary option that might help, but I am tired of hiding me and I am tired of having hope of being "normal". I want to not worry about wearing a hat or wig. I want my alopecia to be ok for everyone and stop trying to make everyone feel less awkward or better about it. I have been making everyone else feel better since I was 3 and am sick of feeling like I need to. I am done apologizing, explaining, hiding, and being medically experimented on to make myself change into someone that is "normal". Does anyone else feel this way and/or have advice on how to deal with coming out of the closet?

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Comment by Vicki on March 9, 2014 at 11:11am
Hi Marie,
My hair started falling out 8 months ago. I wore Buffs, head bands, hats outside and was always trying to cover up the spots. Finally at the end of December, I had my daughter shave the rest off. Since then i've taken it a day at a time. First thing I did was put a pic of the new me on Facebook as my profile pic explaining that I was fine, I just had alopecia and provided a link for more information. Then it was time to go back to work, I sent out an email to people I worked with to let them know. Everyone has been very supportive. I feel so much better being able to be comfortable in my own skin. Now that the warmer weather is coming i'll be shedding the winter hat on the bus and outside and i'll be strong as I walk down the street. It's empowering in a way. My husband and daughter are very supportive, but do feel they need to explain to people, which is fine because that's them, and i'm me. Be strong Marie and do what is right for you. We all have to make the choice for ourselves. It's about your level of comfort and bottom line, your happiness.
Comment by Victoria Hughson on March 9, 2014 at 4:05pm

I have been totally bald since last July. Wore hats and tried the flipping wig which cost a fortune and the entire time time I felt like I wasn't being myself. It took some courage but one day at the grocery store I decided to take off the hat and go in bald. And have been myself ever since. I AM bald. So what! Don't get me wrong I would rather have MY hair back but this is what I have been handed. I must admit I am noticed when I enter a room and I rather enjoy the attention. Head up high and love yourself.A lot of folks have it worse than us.

Comment by Donna on March 10, 2014 at 1:14pm

Hello, Thanks for reaching out.  Every comment brings a sort of solidatiry, don't ou think?! I have totalis, and I didn't experience the growing and losing effect. I shaved it once, and it never came back!! Honestly I thought it would...but it didn't, oh well!!  What I wanted to share was this disease is like any other.  You share it with your loved ones  like diabetes or hypertension.  Children are taught to understand sickness.  And you being the parent explain ..sometimes you want to wear hair, sometime I don't'.  Kids feed off their parents.  If they see your unreast and uncomfortableness, it sets the tone for them.  I received my 'Bald Power" t-shirt Friday, and prompty wore it all day Sat.  That empowered me more. And honestly I have gotten more compliments with my bald head than I have most of my life..Enjoy!

Comment by Midnite on March 10, 2014 at 2:20pm

After reading all the comments here, it made me realize that investing in a few more really nice wigs would be wise.  Men are very much motivated by a woman's appearance; and I like the attention.  Millions of women have expensive styling done on their hair,  so why not throw on a nice wig now & then?

Lots of you are married and don't experience the same turmoil of a single widow.  It could be worse. 

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