After "hiding" for so long, how do you step out and tell the world about your alopecia?

I've had alopecia since I was about nine but I've always kept it hidden under box braids, hair extensions and wigs. Only my immediate family knew for a long time. Now I am twenty-three years old and I really want to get more comfortable with myself. I'm hoping to try going outside without anything covering my head. BIG step.

But how do I just go from wearing a wig one day to rocking my bald head the next and not feel like I have explain it to everyone? Anyone else been here?

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My wife who has alopecia universalis did it by wearing a headscarf instead of a wig in an attractive headscarf style, and when people asked her about it and how pretty she looked in her headscarf with her long dangle earrings and makeup, she told them she had alopecia and explained it to them.

First off, good for you!  This is a big step.  The reality is that going 'au natural' will bring some questions and stares.  It isn't often we see women and their lovely baldness.  I have AU and have gone naked for almost a year.  It took time to get used to the looks.  I barely notice it anymore.  Be prepared to answer some questions.  Most, especially family and friends will think you have cancer and will be relieved with the explanation.  Sharing information is different then feeling like you have to 'defend' an explanation.  

Let us know how it goes.

That is what she does. She shares info, and she educates people, so that they learn more about alopecia.

I just like you had alopecia since I was nine years old , and has hidden it for everybody in all these years except my closest friends and family. ( I am 25 today. )

It was maybe four months ago that I started googling alopecia blogs and found several blogs written by women who are completely open about their alopecia. After I read these blogs for a few weeks, I began to reflect on why I had not the courage they had. So I took the courage and photographed myself without a wig on and put an image on instagram where my friends follow me. (I did not dare to put it out on Facebook, because I thought it was a too big step for me then.)  I wrote that I was tired of hiding and lying about my hair, and explained that I have alopecia which is completely harmless, but you do lose your hair . And all my instagram friends supported me and encouraged me when they saw the pic. It felt like a big stone loosed from my chest.

A few weeks later me and my partner went on a holiday to Thailand. There, I tried for the first time to go without a wig in public, and there was no one who commented on it. Not even little kids pointed at me, which felt very good.

Then I took the opportunity to post a picture on Facebook and wrote the same as I had done on instagram. I have never received so many "likes" on Facebook earlier, and everyone had only good things to say!

I am so incredibly happy that I dared to do it. I dared to show who I am and no longer feel that I have to hide anything related to my alopecia. And, now I can exploit the advantage of changing your hairstyle and hair color in two seconds ;)

Hi Carolina and Chenelle,

It is interesting for me to see a lot of people in my situation. I had been feeling so lonely till couple of months ago which I joined this forum.

I am 27, I was born with Alopecia, so I never lost any hair at all! ;)

But since I was 18, after graduation from high school and going to university, I started wearing wigs and tattooed my eyes and eye brows and applying fake lashes, so except my old friends and family, nobody knows about my Alopecia. It is very annoying when my friends ask me about my hair iron brand or hair color brand. It is very difficult to explain them that it is a wig, I hate pathos, I never talked anybody about my alopecia because it is not a problem in my life. but if I tell other people about my alopecia, they may ask other questions which are very annoying, or they may be more kind with me which I hate it. 

I am really tired of hiding my real me, sometimes in my nightmares I see myself without wig in the public. Unfortunately I am not brave enough to be bald.

Sometimes when I am in the streets or cinema or bus, I am just looking other women and trying to explain the feeling of having hair on my head... I haven't never tried that.

You remind me of my daughter that had UA, she wrote a wonderful book called "Alopecia and Wellness" on Amazon.

I know you will not only relate to it but learn how she got her hair back. Jan

This is encouraging Chenelle. I am in the same situation where i have been so comfortable hiding and i would not know how to do it and say to people if i started walking bald. But this has been a great year since i joined this site. I have been encouraged and i know its possible.

You seem ready to take the big step so may be start small. wish you well and am happy for you.

Let us know how it goes. You will inspire some of us.

Hello Chenelle

I am the same as u, I have only had alopecia about 6yrs but ive had my hair in twice for it to fall out again, I have recently been losing much more hair and wear a hair piece but im fed up of hiding but don't have the courage to go without. I have used head scarfs in the past and to be honest not many people commented but if people did I have no idea how to cope with negative response. Actually I don't even know how to cope with positive ones either.

I hope u have the courage tho and take ur time, I hope I can do so too soon, :) x

Hi Chenelle

You are not alone! I have AU and have been wearing wigs for 50 years and recently decided I would like to try to go public. After all this time it is such a big step. My strategy is simple.... a small step at a time.  I've started by going around my home and garden (large and fairly private) without my wig. Wow, once I'd got used to the strangeness of it I've started to really relish the freedom. My next step was to tell some dear girlfriends and invite them to my place to meet Linda 'au naturelle'. It was a fabulously affirming afternoon. Next I made a point of telling other people, some from the tai chi class that I instruct once a week. I try to make it relevant to whatever the conversation is in the moment. E.G  we were discussing the notion of 'identity'  so that seemed a good chance to bring it up. So far, I've had nothing but surprise and a little curiosity but nothing negative. I try to explain simply what it is and give them some information. I'm planning to go out 'without' this evening  for the 1st time to another regular group meeting, all women again, where I know I will feel emotionally safe and supported.  Once I've had my eyebrows tattooed I intend to post a profile picture on FB together with a brief explanation and a link to this site! I've reconciled myself to taking it as slowly as I need, and my friends have offered to accompany me when I decide I'm ready to go out publicly. At the moment going to the supermarket or shopping mall seems a distance away yet, but NOT impossible. It is, I believe a state of mind and learning to manage other people's responses. I can choose how to do that, ignore them, or if they speak directly, politely explain. I guess when the time comes I'll do it but until then....I plan to continue to read this site and strengthen my resolve. I also have a 29yr old son with AU who has never worn a wig. My late father had AU all his life. They will be my inspiration too.

So keep positive and never give up hope. If we can persevere, we can make a difference for others who may wish to give it a go too.

You're definitely not alone! So many wonderful replies here.

But how do I just go from wearing a wig one day to rocking my bald head the next and not feel like I have explain it to everyone? Anyone else been here?

I've had AU for over 10 years.   I generally would only wear a wig in public. Canadian winters and falls are fine for wig wearing but once the humidity and heat arrives - so uncomfortable. I was so tired of it but couldn't take myself to the next step.    We moved to a new house and new neighbourhood and my new neighbour dropped by unexpectedly - literally stuck her face against our back porch window!   Yikes. There I was in my scarf and no wig - I had no choice. She saw me. I opened the door. She and I chatted. The next time I saw her, I explained what was my condition.  And that was it .  I figured if she knew, she'd tell people (she did) and I started wearing wigs and scarves interchangeably without apology or explanation. The more I did it, the more confident I became.

I did try going bald the first few weeks I developed AU but to be honest -  I did lose my confidence. I'm not sure I feel the need to be bald.  For me - m y head either gets sunburnt or cold!  So, I do wear scarves.  

My advice to you is try baby steps.  Just go out without a scarf on a short walk around the block or maybe a trip to a store.  Just try little trips out.   You can decide how you want to handle people's questions. Not everyone will notice. Not everyone cares to ask. Some people know what is alopecia. Some people will think  you have cancer. Some people will just think you're wearing a scarf - and have hair hidden underneath it.     I am still surprised how may people I meet who see me in scarves but just assume "it's some fashion thing" to quote one person.    

I've been wearing scarves without wigs for over 6 years now.  I can say that even though I have bad days and wish I had hair - I do quite like the versatility and lightness of scarves.  Sure, I will always feel jealous when I see someone with a really lovely head of hair but it is what it is. 

You can do it. Just take your time and don't feel you need to explain anything to anyone unless you want. Good luck!

Hi, I posted my bald picture on my facebook page and explained to everyone that I have Alopecia (Scarring Alopecia) also known as CCC.  I received a lot of good responses on how beautiful I looked and that hair did not define me.  I still was afraid to go outside without a wig, hat or scarf.  I  prayed and God gave my the strength to go outside.  I went shopping and no one reacted any differently towards me.

But I still had to master going to work this way.  A co-worker asked to see my hat and she took the hat and locked it in her drawer and said if I really needed it to come back and get it.  God has jokes, because that day everyone needed my help with their computers, so I was all over the office with my bald head. LOL

Just take it a day at a time, you will get the strength and when you do decide to show your beautiful self, you will have such a feeling of freedom.

You are gorgeous that is a beautiful picture



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