Alopecia World
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27 and covered up
Well, here it goes. The support. This is my first post--first public discussion.. I have determined, after having Alopecia since I was 4 - it has owned me. I've allowed it to limit me in ways that myself-a strong woman- should never do...I am 27 and I have never been in public without a wig or a beanie. I am ashamed...i don't know why. The looks.. The stares. I don't want to be identified by my baldness..."hey, here comes the bald girl..."...I want to be known for my incredible personality that I have developed over the years to way make up for m lack of conventional outer beauty. I don't have the balls. I am so ashamed I have not let even my parents see me bald...not since I lived at home. I'm frustrated with myself...swimming is a chore...motorcycle rides, the summers in Maine. I always feel like I'm hiding. I am the manager of a bar, so my looks alone are workplace valuable---I do not work at Abercrombie by any means...would I get fired? I just....want to be myself. I just joined Alopecia World. I am reading about everyone's "big moments of acceptance"...wonder when mine will. I am not ashamed that I have Alopecia...I am woried about how brutal people will be...like...opening up a new world that takes away my anonimity that i have created with blending in with a hat and a hood...to sticking out...explaining..."no I do not have cancer"...to those so bold as to ask me whats wrong. I am fine. just...scared. I feel so beautiful as I am. Its tasking others to accept this "unconventional" beauty that scares me. I am worried that it will be limiting...and freeing at the same time. I have some roots, and no roots. It looks funny...I shave it so my head looks like a cow hide/world map; if it were all bald it would be one thing...but its not. its mottled. I had had 3 full cycles of hair loss/growth in my lifetime. I just...want to accept this.
Replies to This Discussion
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Permalink Reply by Emily Naples on
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When I was in High School, I was in the middle of a patch cycle - in my small hometown, I was comfortable at that time in my life as a young woman to be able to be walking around half bald. It was when I was 16, and had a job in a hallmark store; wrapping presents that year, a customer came up to me and blasted: "HEY! What's with that new MTV haircut??" I was mortified. At that point I realized I could no longer be a child with Alopecia. I was turning into a woman, and looks mattered.
Thats a struggle for me now: I am so happy and sexy feeling about myself most of the time. I have no issues looking at myself. I do however, care what people think in the course of things, ultimately, being so extroverted as I am - because In NOT the only person who will have to continue looking at myself my whole life. If that were the case, that would be one thing! :) However, I enjoy people - And you all! Thank you so much for you support :)
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Permalink Reply by Lisa Santer on
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Welcome Emily. Sounds like you are on the edge of some exciting times! I know some people write about "big moments of acceptance." My 33 year long path has only had little moments, but lots of them. I'm flexible about what makes sense in the moment. When I worked in children's Emergency Departments, I felt going bare-headed would distract patients & families from the pressing issues at hand, so I always wore a wig when on duty. I didn't want to pretend I had hair, so I changed up my wig depending on my mood--hmm, today I feel blonde; tomorrow ravishing auburn beauty--it had it's fun side. Not one person in EDs EVER gave me a hard time about it. Some expressed appreciation for particular styles, but not in an icky way. I think switching up wigs gave them and me a chance to get used to the idea of me being bald. In my office, I started going bare or with a scarf or hat depending on temperature and mood. Still no problems, and some opportunities for conversations.
Now, I do different work, and don't wear wigs. I live in the center of Philadelphia, take public transportation, and go through crowded places frequently. If I think about it, I think I am letting people see a comfortably uncovered bald woman. Odds are, some of those people are uncomfortably covered bald people. Maybe once a week someone asks about having cancer. Somewhat less often, someone compliments my looks. More often than I'd have dreamed when I was young, someone is attracted to me in part because of my baldness (even with the world map pattern). Some of my lovers have found shaving my head an intimate bonding experience--not in a creepy fetish way.
I don't recall any adult being brutal about my baldness. I rarely see anyone staring at me, perhaps because I'm not expecting it. When I do see them, I figure some are thinking about how good or confident I look, or where have they met me, or they wish they'd have the nerve to go around like me, or where did I get that great scarf/hat, or is that really a map on her head. So, I don't worry about the stares--the stares are actually about what's in their heads, not what's on mine. Currently, my friends and family seem proud of me being me. I think they generally take their cues from me--if I'm nervous, or embarrassed, or focused on my scalp, or relaxed and focused on what we're doing, they're like to be like that too.
Finally, I've had several cycles of hair loss (thru AU) & regrowth too. The transition times are always the hardest for me, followed by the persistent spots of hair in a sea of scalp (like I have now). I also shave the spots because I prefer the cleanheaded look. After 2 years, I'm used to it, and go about my full live, often truly forgetting what's on my head. You can, too.
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Hi Lisa! I hope I am on the cusp of something exciting! Thank you for your encouragement; I am happy for you Philly is accepting! I seem to think that coupled with your AMAZING confidence, that major cities may be more accepting, and less perceptive of diverse looking people. Maybe I should move to a city and out of rural Maine! (I've always felt stifled here anyway).
Liberation does not come easy.
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Permalink Reply by Tallgirl on
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I moved out of Michigan for Self-Therapy to San Francisco at age 21. Out here, I could HAVE things my haired friends in the Motor City and suburbs could only dream of...and I could go to art school, see an ocean, have better air and food, meet more liberal people, have crazier times away from the eyes of family. I still think I made a great choice for myself. Even the train trip out here was exciting! When I now see my old classmates having nothing to say/do/show but Farmville and the new doggie coat on Facebook, I am glad that in 40 years I have led the fuller life. Despite alopecia.
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Yeah, I think geography matters, which is why I live urban. Still, the Emergency Department jobs were in Jacksonville Florida & Birmingham Alabama--not exactly hotbeds of liberalism or open-mindedness. I've been out bald in wilderness, beach, desert, farmland, suburban, & urban in the US and Canada, as well as in Mexico, Guatemala, Belize, Puerto Rico, Guadeloupe, Bahamas, Japan, and much of Europe. Visiting family in India & friends in Israel, I wore scarves & fit in easily. All those places, the worst anyone said was asking/telling about cancer or (once) are you a skinhead? Those rare comments do take me aback, because I'm usually thinking about something else & I don't like the change of subject. However, if I imagined choosing between NEVER getting a single bald comment or stare in the last 33 years & the rest of my life or losing even ONE carefree bare-headed day at the beach, I'd easily choose keeping the carefree beach day . My confidence doesn't seem amazing to me now, because it's evidence-based. Yours can be, too.
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Permalink Reply by Brenda Sanders on
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I'm 64 and I still can't let go of the feeling that I did something to cause this. I still wear a wig because I don't want to be judged or asked a lot of questions.I do just want to blend in and be like all women. I don't care about beauty anymore. Just want to be an average women.
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I don't know if I ever will.
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Hi Brenda
I understand completelyI am male but same feelings
Tony
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I'm glad someone other than my family gets it,
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Thank you!
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Permalink Reply by Nancy King on
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Hi Emily!
I wish i had an answer for you; but, i'm still waiting for my big moment too. I think mine will creep up on me and take me by surprise. I have female pattern baldness with some traction baldness thrown in by me (baldness i caused by pulling up my hair too tight trying to hide the loss). My hair loss started when i was 17 - i only know that because someone told me i needed to start parting my hair in a different place 'cause my part was getting wider. Anyway, i am conditioning myself to think of all of us as pioneers. When things change in the world, there has to be someone to start it. For other people's acceptance, there has to be someone out there to give them something to accept. That would be us, right? I have 2 really supportive friends who have done what they can to help me get it into my head that the outside of my head "is what it is." They still love me :)
So, with that in mind, i took the clippers and shaved down to about 1/2 inch of hair. I figured after all these years, my scalp deserved a break. I won't say i have arrived at my big moment though. I still wear hats or bandanas. But when i'm in the car by myself, i throw my hat in the passenger's seat and just enjoy the ride! (really helps...i have no A/C!) I think it's progress. And i can't wait 'til i'm up to leaving my hat home all the time.
Have you ever seen any of the X-Men movies? Well, part of the philosophy i'm trying to adopt comes from the character Mystique. She's always walking around as her naturally blue-skinned self and doesn't care what anyone thinks. When asked, by another blue-skinned character, why doesn't she just use her powers to look like everyone else, she replied, simply, "because i shouldn't have to."
Funny example, i know. But i think she's right :)
Good luck to us both!
Nancy
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