Alopecia World
Where acceptance is all there is!
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?
Comment
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Comment by Midnite on March 10, 2014 at 2:20pm
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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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Comment by Donna on March 10, 2014 at 1:14pm
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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!
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Comment by Victoria Hughson on March 9, 2014 at 4:05pm
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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.
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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.
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It's funny...I have never had a problem "coming out" to my family and friends...I can't come out to myself:/ Also in my job...my co-workers and the public in general. I too do not know how to do that....I've been struggling for 2 and a half years since I developed AA which has recents turned into AU:( I have spent every last dime I have on "hair systems" I never let my BF see me without my "hair"! I can barley stand looking at myself without my hair on! I also have eyebrow "wigs" I'm a mess!!!! My psychiatrist tells me I must learn to cope with this, but I just can't find a way. Maybe I need more time...I applaud the women who are brave and strong..who can face the world the way they are! I just can't:/ This disease has destroyed my life...taken my identity my money my self esteem! It has robbed me of my life! Don't let it do that to you! Good luck my friend!!! Let us know how you do " coming out" :)
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Comment by Kaylee Mitchell on March 8, 2014 at 12:12pm
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I've had aa since I was 3 and for most of the time I didn't know why I had it or what it even was, I have a feeling that your daughter just doesn't understand everything you're going through since she's so young but will come around, I don't know anything about marriage but if he loves you he will support you in whatever you choose, be confident with yourself and what's not to love
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Comment by Tovah on March 8, 2014 at 11:07am
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Even though I've had alopecia since I was about 14, it had remained as just 'thin hair' until 6 months ago when it just really started FALLING OUT! I found it easier this time to JUST COME OUT. I had spent so much time and energy trying to cover up the bald spots, that I just found it easier to let people know what I'm dealing with. They're usually really understanding and not turned off in any way. Do I have my bad days? Absolutely, I'm angry that I have to wear a hat or a wig or extensions, but it's absolutely easier on me now.
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Comment by Mz Tracy on March 8, 2014 at 5:18am
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I too wanted freedom from my wigs and hair pieces. I shaved my head from the puzzle pieces and wow what a relief!! My friend gain your freedom and at the same time respect from those that love you. You have to teach them by showing them how to accept you and that Beautiful Bald Head!
It's Beautiful because it's now the true authenticated YOU!! Be Free my Friend!!
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My 7 year old daughter has had as since she was 4 and I understand how you feel.. I really feel like I have to be the strong one here but I have my ups and downs... She is not at all worried about it... She is going thru a good phase but even through the worst ones she is always ok and it really got me when you said you have always been making everyone feel better about it...
Big hug from Spain
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Comment by Dorothy on March 8, 2014 at 1:58am
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I have AU, it developed as I was in the hospital after giving birth to our oldest. With her I was always so afraid she would see me as a freak and reject me. Call it what you want, me seeing the future of me making the future, I believe because of my attitude, that is exactly how she saw me and as soon as she was out of school, she moved out because she did not want her friends knowing I was a freak, her words.
Our next two children came along much later, tho I still have my AU, I was not the neurotic parent about how my children might or might not be embarrassed to have ME as a mom.
All the time my husband NEVER acted like I was anything but the person he fell in love with and always tried his hardest to show me he loved me no matter. The entire 38 years we were together before he died, HE was my rock and he never thru it in my face, not once made me feel less. I am certain without his support, I would still be crying my eyes out every night for every hair lost.
What I am trying to say is you have to find a certain amount of comfortable with this disease, so does your husband. I feel otherwise, how you feel will be how your child(ren) see you.
I think how you act about your alopecia is what children pick up on and tend to either accept you and your alopecia or not depends on what your signals are, while I might not be as accepting as I might, but I sent different signals for these two. (I have a very wide spread between child one and children two and three, it was like raising two different families.) If you feel like you must apologize for having this disease, then that would be admitting you did something wrong to get the disease. We all should know by now, that simply is not the case, so what would we be sorry for? I am comfortable to the point that I am who I am, I make no excuses.
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