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Hi! I'm New Here. How Many Of You Are "Out" With Your Alopecia?
Hi! I'm a little nervous, so if you make it to the end of this post, thank you for reading. OK, here goes...
I have had alopecia since I was ten years old. I'm 53 now. I had no idea what was wrong with me other than that "your hair just won't grow", as it was explained to me and my mother when she took me to the doctor to figure out what was wrong with me. So of course this happened while I was in school, but thankfully during break. I was told by my mother when I got my first wig to just tell the kids at school my hair grew over the summer. (I went from a very short and fine pixie cut to curls down to my shoulders - the world's fastest hair growth! ;) )I was told to never tell anybody I was wearing a wig because I wouldn't have any friends; that people would make fun of me, and call me a freak. I was told to never let anybody touch my hair or run their fingers through it. I remember one time when there had to be a lice check at school and I was so terrified my secret would come out when the teacher got to my head. THANKFULLY she kept my secret, for which I will be eternally grateful.
I made it through grammar school, Junior High, and High School surprisingly without incident. If my classmates knew, they said nothing. I had my little "defenses": making sure I wore tight headbands to keep my wig in place, thousands of bobby pins securing my wig to what little hair I still had left, wearing caps on rides so I would have an excuse to hold it (and my wig) on. I was heavily involved in theater, so I had to make sure to work wigs into my rotation that I wore every day, yet I could style myself to fit whatever role I played. I wasn't allowed to date without a chaperon, so no chance of a boy running his fingers through my hair in the back seat of his car. My mother told me that nobody -NOBODY- could ever know I wore I wig. Once I went away to college and had roommates, I had to create elaborate means to get wigs once they began to look worn; taking buses across town into neighborhoods where I wouldn't run the risk of them or anybody I knew seeing me. Again, I don't know if they ever knew or suspected, but these friends have loved and accepted me since we all first met in college.
I finally met my husband in my 40's - a man who thought I hung the moon and the stars. Like an idiot, I kept making him pass little tests, thinking, "A-Ha! He thinks he loves me, but he won't if he knows X/Y/Z". I finally worked up the courage to tell him about this.... And he still loved me. He still wanted to marry me. He was the only person outside of my parents to know this "horrible, awful secret" and he still wanted me. And he didn't call me a freak or leave me like my mother feared. The only thing that separated us was his death.
SO.... Here I am now. I'm 53 years old, and I've decided that this condition -rather the secret of it- isn't a burden I want to carry anymore. Those friends who have loved me and supported me through the best and worse moments of my life? I want to tell them. I also want the knowledge of my alopecia and the hair I wear to be something I choose to share when I choose to share it (or not as the case may be). So how to do it? Should I do it?
THANK YOU for reading this. As I said, I've never ever told anybody this other than my husband. I just figure 40 years is long enough to be ashamed of what is (or isn't) on my head.
Replies to This Discussion
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Permalink Reply by Dollhead on
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Thank you, Aimee! Yeah, to quote some famous lyrics, "what a long, strange trip it's been!" It had to have been hard for my mother. I guess mothers have dreams and ideas for what they think their kids will be and be like, and to be presented with the fact that your kid's not going to look like that has to rock your world a bit. My mother had thin, fine hair and eventually had to wear wigs herself, but this was back in the early to late Sixties where women frequently wore wigs and falls. Having a kid that had to do it? Not so common. She then thought it was hereditary because she had fine hair, plus she also said she started loosing her hair/it got thinner when she was pregnant.. We didn't get to have kids, but when I'm feeling particularly mean-spirited towards myself I'll think, "well, at least you won't be passing THIS along to them!" (Not that it would have mattered to me in the least as long as they were healthy and happy.) I remember once when I was 5 my mother chasing me around the house with a HUGE pitcher of ice water - cubes and all!- after she'd washed my head because somebody told her pouring a pitcher of ice cold water on my head would thicken up my hair and stimulate hair growth!!!! OMG! Hated that SO much!!! She did the best she could with the tools she was given.
Honestly, I didn't know there were support groups until I was looking up a reference for Sir Patrick Stewart (yes, Captain Picard! :) ) in "I, Claudius". When I started reading his bio, I discovered that he lost his hair when he was 18, and he said that he never thought anybody would love him because of it. I remember thinking, 'OMG!!! That's ME!!!! I thought the same thing!!!" (Honestly, I'd really like to write him about that, but he'd probably think it's strange a middle-aged bald woman was baring her soul to him about this.) Then I also found a You Tube video of a woman who is half my age giving tips on wigs and her history of alopecia, and I thought, "this woman is half your age, and she can do this. What's your excuse?" I'm not particularly ready to set up a camera and lights, BUT... I am ready to release this burden. Baby steps, baby steps.
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Permalink Reply by Xeljanzmiracle on
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Hi Dollhead! After 6 years of AU, I came to the same decision this past spring. I went on a cruise and instead of buying new wigs for the trip, decided that I was going to throw the ONE old one I brought away on the first night. I received SO MUCH LOVE AND SUPPORT on the boat that I decided to tell everyone about my disease when I got home and go bald everywhere. I was also in the process of getting approved for Xeljanz and told everyone they would be part of my hair regrowth MIRACLE and so it has proved to be. You can read my discussion ,"From Totally Bald to Regrowth in One Month!" for more details on my background and hair regrowth results. It has been SO LIBERATING to not feel forced to wear wigs after 6 years. I can only imagine how FREE you feel after 40! Pictures below.
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hey Xeljanxmiracle, this is a crap of a regrowth!
I have seen bigger regrowth on AU dyring a month's period, without any sort of treatment.
No way you can call it a "miracle", some brittle hairs here and there.
You are not -until now- ready to advertise this cure. Wait till have a durable and cosmetically acceptable regrowth
and maybe you can commminicate us back.
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Icarious, I don't appreciate the disparaging, negative remarks. Just to clarify, The FIRST PICTURE is a BEFORE PICTURE, the one with tiny white hairs is after a month on Xeljanx, the third is the longer and darker growth I have now. My doctors, family and friends are all amazed at my regrowth and so am I EVERY DAY. You are not taking my joy and happiness away.
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Xeljanz girl, just chill.
You can still get some benefit from negative comments, Getting grounded is a serious thing when it comes to AU. This is my point of view, the way i see it, and i repeat, "miracle" sounds pretty much for it.
Of course there is *some good* regrowth and we all hope to be a full growth and for good.
But you are carrying out en experiment on yourself without knowing in advance a number of considerable issues
1) The final results
2)How long will u keep your hair without xel
3)Long-term side effects.
Xeljanz is not the safest medicine i guess and most expensive. It is not considered a very *safe* workaround, what you are doing.
So, by no means you are ready at this time to encourage other sufferers from AU to follow this path.
At least not yet.
Big Peace and best of luck to you
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That's your opinion. As for me, I will continue to encourage those that want to try Xeljanz and my fellow Xeljanzer's that are already on it and experiencing exciting regrowth. I suggest you read the Yale and Stanford trial results that were just published regarding the safety and efficacy of Xeljanx.
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At any rate, Icarius, my remarks were to Dollhead, who started this discussion. She wanted to know how others were handling being out with their AU and I gave her my personal experience. I am encouraging her to come out of her wigs after 40 years of hiding, if that is her inclination. Before I found out about Xeljanz I lived in Hawaii for 6 months and let everyone see I was AU over there. I was swimming everyday and didn't want to worry about the waves knocking my wigs off or wearing them in the pool. It's up to you Dollhead, your choice, and I support your decision.
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Hello Xeljanzmiracle, what's the name of the article that shows the results from the Stanford trial? I found Dr. Kings article about the alopecia study but not Stanford ' s results. Thanks
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Reading your post made me think of my daughter. She's only 4, and she has a wild head of long, blonde curls, but if she ever lost her hair, the last thing I would want would be her to feel broken or ashamed or a freak. I lost most of my hair in my mid 40's, about 3 years ago, and for me the choice of being open or not was easy. I knew I didn't have the time or emotional energy to invest in keeping my hair loss a secret. As well, I didn't want my children to think it was some dark secret, and I knew that with them around keeping it a secret wouldn't be easy anyway.
What comes to my mind as a way to share is to pick out a new wig, a hairstyle that helps you feel good about yourself, and just wear it and let it be the conversation starter. When I started wearing wigs, I got lots of compliments on my hair, and I often gave a quick explanation that it was a wig and that I have alopecia. Obviously you have a lot more history and emotion connected to your wig wearing, but people are likely to take their cues from you. If you are at ease, they will be. It sounds like you have some great friends who will only want to support you. You will know when the time is right. Just do it. :)
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Permalink Reply by Cheryl, Co-founder on
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HI Dollhead, I remember when I first stop wearing a wig it was very uncommon. Women, men and children all covered their heads and chose to keep it to themselves. I am sure that your parents were doing what they thought was best at the time. It doesn't matter when you come to a point to let something go, only that you had the courage to do so.
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Thank you so much everybody for your replies. I don't think I will ever go without a wig because it is so much a part of who I am. When I see myself with the wig off, it makes me uncomfortable and I look strange to myself. When I was a child and my mother made me take my wigs off when they were new, I always wore a scarf to sleep, and then I just took to wearing the wig all the time. (I'd circulate the old wig for sleeping at home, the new wig when I left the house. Needless to say, I didn't have a lot of sleepovers or go to them.) My mother wouldn't let my father see me without it on, and she never let him see her without hers on when she had to start wearing them full time. And, actually, my husband never saw me without my hair system on, either. He knew I had AA, but I never showed him what I looked like with little or no hair. I, for the first time, finally shaved my head about two months ago - and the patchy growth returned. (I was like, "REALLY"? If you're going to grow, would you mind doing it all over my head? Plus I'm going to be annoyed that, after 43 years in a wig, all I had to do was freaking shave my head!" :)) Even if I were to shave my head, I have too many scars from when I tried bonding. The hairdresser who did that would weave tracks into what little hair I had, and glue the wefts to that, but had to stretch the added hair across the bald spots, and add the bonding hot wax, which would seep through the track onto bare scalp. So I have burn scars from where the wax was too hot. So, bald is not beautiful on me.
About 20 years ago, I found a hair system that worked, but it's become too expensive for me to keep up - hence my return to wigs. Although now I know about lace front wigs (the hair system I was using before had a lace front attached to it), and they're becoming more mainstream, I still have to find a brand of wig that fits my head and that looks realistic. (Lace front wigs were primarily used for stage and screen, but they're usually whole lace constructed for the actor, and there was no. way. in. Hell. I was going to let make up see me without my head covered.) So there's been a lot of trial and error. Plus I've been on temp assignments, so I haven't been at an assignment long enough for it to matter. If I change my hair, who cares? I won't probably ever see you again once the assignment's over. Plus I try and disguise things by always wearing the wig in a low ponytail or bun, and never down.
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