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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 Pam D. on
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Diagnosed with AA at 58; never kept it a secret from my friends. I wear either a wig or a hat wherever I go, depending on my mood. I don't like being bald-headed, even at home; just my preference. My hair has come back twice; now I've been almost a year without hair. Never lost my lashes or eyebrows before, but the lashes are almost back and the brows are finally trying. Not sure if it will extend to my scalp, not going to worry about it. After a year, I pretty much have accepted whatever does or doesn't happen.
Of what is there to be ashamed?
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Permalink Reply by leah on
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Hi dollhead, I hear you and sure your a doll even with just your bald Head! :) I feel its easier to tell close family member or friend first. Or stranger, maybe if you get comment on your head or say I found things great supportive site for people with a unique disorder like me. Being casual and confident bout what you'l share I think is key. I'm sure if speak from heart with a close friend and tell you are bit nervous they'd be understanding. Some people told me they knew before I told them, just one old boss told me not tell people. Everyone has their opinion.look how great husband was about! "The only we have to fear fear itself". But I know is hard for me at times, when first dating or someone goes on bout my 'hair' a d if around a lot people. Best and let know how it goes. Thanks
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Permalink Reply by LyndaM on
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Yes, hi, Dollhead. I too am one of the secret ones. I had it from 15-16 and then remission for 25 years. Then it all started up again at the rear of my head. Only 4 years ago at the age of 50 with a prescription for a strong betablocker drug (Propranalol) did all the hair fall out in 7 weeks. And I'd told no-one in my family, ever, since it started at age 15. So it was a huge shock. My two sisters (one a health professional) cannot take a lot of talk about it and the health professional says she'd have to build up to seeing me without hair. My partner of 13 years has been utterly wonderful throughout, "hair off" [wig off] every evening and no reaction, I've been told I'm the same with or without hair. So, yes, every secret will eventually come out and that it what has happened to me.
As to telling people, I've just got a new job after 15 years in the previous job. The previous job was with health professionals so you couldn't hide anything from them. And of course I'd lost it whilst I was at work there. But this new job - I've said nothing to no-one. People never ever think of conditions like alopecia and the effect they have on your life. And they don't want to take on board that sort of knowledge, information. People might say to you "Ahhh that explains a lot". You might have to explain what things are, continually. It may be rather difficult for you. People just want it light, easy, they don't want to have to cope with huge emotional stuff. Friends - yes. Work colleagues - no.
And your mum was doing what was the very best for you at the time and there's no arguing with that.
But I really really really understand what the keeping of secrets can do to you.
My partner and I are going to get married in the next year or so. I am determined to have two wedding photos. One with the registrar-my partner-me with hair. The other is going to be with registrar-my partner-me without hair. Because that is the real me. And if we interview a registrar or two and he/she cannot take that idea, then we're going to find one who can.
Because after so long, the lack of hair is you, you entire, and you are lovely both with and both without hair. xx
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