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 Courtney on March 7, 2014 at 3:23pm

Marie,

I am so glad to know that I am not the only one feeling this way!! Here is a little about what I have been through:

 My first episode with Alopecia, was when I was about 19 years old. My life was VERY stressful, and I started to loose my hair in small round patches, and eventually, within 6 months, I had lost all my hair from my ears up. So, I shaved what little hair I did have, off. I had Alopecia for 2 years during this episode, and was completely bald for 2 whole years, and wore wigs. I got out of the situation I was in, focused on myself, and as most of the stress slowly went away, my hair started growing back, in patches, very very finely. My hair finally grew fully back in.
I didn't have any problems with my hair or Alopecia again, up until about 6 months ago, when I started loosing patches just like the time before. Like last time, I lost all my hair from my ears up, so again, I shaved what little hair I did have, off. I could have sworn, that having it the 2nd time around, would be easier.... SO NOT TRUE!!! SO MUCH DAMN HARDER!! All I could think was, "DAMN IT!! Not again, please Lord, NOT again!". But, unfortunately it did, it happened, I had my 2nd epsidode of Alopecia. I shaved my head for the 2nd episode of Alopeica about a Month and a Half ago.
I've come to realize, that hiding the fact that I have Alopecia, I am bald, and I wear a wig... makes everything for me SO MUCH WORSE! My method?...To be as upfront and honest with as many people as you know and meet. Before they can even ask ANY questions... answer them for them. It has helped me TREMENDOUSLY, and I have gotten a TON of support.
I am hoping that my hair will soon grow back again... but if not... I am just "Bald and Badass"!

I know how hard this is to do... but the more open you are about it, I find it's easier to cope with. Try not to play "poor me" (which I am sure you won't, and I am definitely not implying that you would), but more or less, just explain, the more open I am about my alopecia, and each person I can discuss it with,helps me cope better. And immediately, others will start to understand and accept it as well. 

I hope this is helpful, please message me if you would like to talk! :-)

Take care, and stay strong!!! ONLY BE YOU!!! xo

Comment by Tennessee Mom on March 7, 2014 at 3:27pm

My daughter made a notecard video on you tube where each card told part of he story and then posted the you tub video to her facebook page.  It was very powerful.  She did not come up with this idea on her own.  She "borrowed" it from another young lady.  Not sure if the link will com,e through but here it is  http://www.youtube.com/watch?v=quFXCzPx9IU

Comment by GP on March 7, 2014 at 3:28pm
Communicate to your husband and daughter exactly what you wrote in your post. It will be difficult for all parties involved, but things will improve, especially after you speak your mind. They will have a harder time adjusting then you will, but they have to see that your ok with it first. Be very patient, they will come around, because they love you.

I went through the same thing with my parents. I had totalis at age 4 and universalis by age 5. It will be hard, but so worth it in the long run. Own it and be proud. Best of luck!

Guy
Comment by Tim Irvine on March 7, 2014 at 4:09pm

I did in 1986. I chose a place that was absolutely loaded with people. I was running a 10K in New Orleans that had 22,000 people in it. My logic was, if I can go and suddenly face 22,000 people, then I would be better prepared to face the hand full of people in my home community that I feared facing the most. It worked in the fact that it got me started. There is no magic bullet. You will gain more confidence as you go and after a while, it won't matter any more. Best of luck! I hope this helps some. Tim

Comment by Solange De Santis on March 7, 2014 at 4:09pm

Marie, I can only relate my own experience. The more confidence you express, the more people will accept the way YOU want to live. Your appearance is yours to control. No one else has the right to tell you how you should look. Check out some of the wonderful photos on this site of brave, beautiful, bold women who have the same interesting non-hairstyle. My decisions: I had my eyebrows tattooed because I have alopecia universalis and drawing them on every day was a pain; I always wear and have fun with earrings; I wear makeup including eyeliner to make up for no eyelashes; I don't wear false eyelashes since they are a huge pain. I have managed to lose 40 pounds on Weight Watchers and now I am a slim hair-free woman with a nice figure. Yesterday, a friend's 6-year-old son asked "why do you have no hair?" I simply said, "I have alopecia areata, an autoimmune condition that causes hair loss." "OK," he said. Best wishes.

Comment by MarieCC on March 7, 2014 at 4:12pm

There is no need to come out when others knew that you had alopecia for many years.  Let me share my story. Maybe it will make a difference. I am Mediterranean therefore I have genes that allowed me to have locks of hair past my hips.  Well, I lost it all.  Yes, I was depressed for about four years and once in awhile it creeps into my mind when I look in the mirror.  People used to stop me to talk about my hair or touch it.  Well, one year, I decided that I did not want my only son to be afraid or ashamed of me in the company of friends because I had alopecia totalis.  So, I asked him questions directly.  We had a heart to heart talk about my condition.  He asked if he could touch my head and look closer.  I allowed him.  Within minutes he was crying and I too.  He said, Mom, your beautiful no matter what happened.  And, you have a really nice shaped head.  Its round and not knotty.  We laughed.  Then, he was frank.  He told me that his friends would ask continuously if I had cancer.  This would upset him.  The remote idea of his mom having cancer made him even more upset.  He found himself always talking about my alopecia.  Or some thought I had HIV. This too upset him.  Now, before people meet me, he tells them beforehand.  Simple and sweet.  My mom has Alopecia, an autoimmune disease that made her lose her hair.  Sometimes she wears a wig, a scarf or nothing.  I hope you don't mind.  In every instance, they love him even more for supporting and loving his mother.  Now regarding my husband.  It's sad to say that it did affect him more than my son.  He had an affair.  I was done with him after this.   But, something happened with greater reward.  He analyzed what part of me he loved the most.  He loved my smile, my eyes, my shape, my friendship, my ability to socialize and as he says, I can rock his world better than any twenty year old.  There were many times in the past that he never looked into my eyes when we made love.  After we made up, he cherished me.  He supports me.  He too went through much explaining what I had and it made him uncomfortable trying to explain.  He followed my son's example.  He says, I am with a woman that has Alopecia and I can't ever imagine being without her. She is a better person that I because she forgave me and always loved me.  Wow.....simply sharing truth, honesty and love.  What a concept.  Maria

Comment by Dena on March 7, 2014 at 4:19pm

I don't have Alopecia, but have a very beautiful daughter who has lost all hair, eyelashes, eyebrows, etc. When she first lost her hair, I probably did everything wrong in an attempt to help her. Not because I was ashamed of her, but I feared how people were going to react. So we tried all kinds of crazy treatments, I bought all the cute hats, headbands, and bandanas I could find, and even bought a wig for a 7 year old who never asked for one. I was always trying to compliment her on her new wig, hat, etc. and always made sure to remind her to grab her hat heading out the door. I was so scared of someone saying something that would leave her embarrassed or worse feeling like she wasn't beautiful. I was an emotional wreck and just wanted to get to the point where it wasn't constantly on my mind. Anytime someone noticed her cute little bald head the questions always started and made even a short trip to the grocery store into a conversation about her health and well being. I really just didn't want to talk about it and assumed it was bothering my daughter. I felt like when total strangers asked questions or gave advice, that they were invading our privacy to a certain extent. Funny thing is my daughter loves to tell people about her having Alopecia. I was so nervous I never noticed. Now I see she likes to impress people with her knowledge of Alopecia. Then one day we were goofing off taking pictures and she saw a picture of herself and said I should put it on facebook. That she thought she looked really pretty in it. It is my profile picture and she does look really pretty in it. It is probably one of the first pictures I took of her bald with no hat or headband. It dawn on me that she thought she was beautiful even though she was bald and she didn't feel the need to keep that from anyone. That was the day of our new normal. Now her bald head is normal and I honestly think she looks better without her wig. The wig looks natural, but it just doesn't look like my daughter normally does. Now we know we are going to be stopped in the store and people are going to be curious. It has taken some time to get use to, but I am at a point where I realize everything is going to be o.k. I honestly think even though I made mistakes they were done from a place of love. We were going through something so rare to most people that it was inevitable that I was going to make some mistakes with the way I was handling things. I say show them the new you and once they see you are confident and o.k. with things they will start to relax.

Comment by Lucky on March 7, 2014 at 4:40pm

I now have alopecia for three years. At 56 I started with aa, then at and for over a year now I have au.

At first I wore hats, I took every medication and lotion and cream available for this condition. I even had the shots on my scalp.

I've worn hats, for like a year everyday. I then began buying wigs which I was tatally uncomfortable with. I din't like how I looked or how they felt.  It wasn't until I lost all my hair completely that I became brave, and decide I want my life to continue as normal as posible. I have children (girls) a husband and a job that I love.

I wanted to continue socializing with my friends, and I said shit, my hair does not define who I am, my heart does not wear hair and my brain does not wear hair, but I am a woman and we do like our hair, well when i had it.

I ordred a wig that yes cost some money, but it is the best. You don't need tape or glue and it is comfortable..It sticks to your head and it does not move or hurt.

I have since September and I have not taken it off since (just to wash and style) which i do myself just like when I had my own hair. All this to say, maybe you can wear one of these wigs and you will look great and like me forget the alopecia. You won't have to explain anymore,

Best to you and all with aa, at, au.......

Comment by Marsha Lampert MBA MS on March 7, 2014 at 5:33pm

Marie,I am wondering why you seem to be afraid of wearing wigs. I too was a bit scared 4 yrs ago but decided wisely that there was nothing to be ashamed of or afraid of & ''dove in'' & found ''the water's fine''. Since Then

I wear wigs 24/7 including sleep/swimming etc. I am only wigless in the shower or tub.

Now I have over 50 wigs,& my wearing a different one each day/night is a non-issue. People in fact are complimentary & supportive,including my employer! I am open candid & proud of my being a 24/7 wig wearer

& easily disclose it even to strangers. I teach music lessons privately fulltime & study music professionally & perform all over the place & my students/teachers/musician colleagues have no problem with my wigs although no one knows from day to day what I will look like & which wig I am wearing. It could be almost any color other than gray,silver,white,salt/pepper,or carrot red, It could be long extra long short medium etc & it could be frosted or shag or curly or wavy or straight etc, I perceive my wigs as ''my new hair'' & love experimenting with barrettes clips bows ornaments hairbands etc, & I even swim laps. Almost all my wigs are custom sewing altered to fit my dwarf 17 or 19 inch head securely & have dermafix sewn in the caps so I never need wig tape ! My wigs stay on secure even when wet ! SOOOO Marie,try to follow ''in my footsteps'' & be proud upbeat positive & enjoy the awesome freedom & confidence of wigs MarshaLampert@aol.com Marsha Lampert MBA MS

Comment by Matt on March 7, 2014 at 5:39pm
Totally relate. I am about 10% away from totalis. My head looks like a soccer ball of smooth and patches. My Daughter is 2 and doesn't seem to notice yet. At 5 I think yours is well capable of adjusting.
My wife is supportive but I don't think accepts that it might not come back. I always get asked if I'm in chemotherapy or sick. I hate trying to always wear hats, I workout almost daily and it's too hot.
I am hating the scalp injections more and more and don't think I can keep it up. They seem to slightly work but overall patchiness is made worse in the couple years I've been at it.

I am more frequently going hatless and just suffering the indignities that go with it.
U r right that men (your husband) are motivated by a woman's appearance, so I think it's def worth throwing on a wig sometimes for his and your relationships sake. I don't think it's mandatory all the time!

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