Alopecia World
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A year ago I had hair
Just another bald woman. Well, I'm not entirely bald, but the few straggly remnants and the white mohawk weren't doing me any good. I got up the resolve to shave it off. The cleaned up look is definitely better, but my initial reaction was just sadness, as if I really had been kidding myself for the past months that my hair would grow back and be OK. Going from a little hair to no hair felt like a big step even if it didn't look like a big one on my scalp.
When I first envisioned myself as bald, all I could see was a tired, aging version of my older brother (who has plenty of hair by the way) on a bad day. Maybe I am more used to it now, maybe I actually look better, but I can look in the mirror now and see femininity. I hardly dare admit it, but I can see myself as pretty (at least at the right angle and with the lighting not too harsh, and probably I do need glasses). I was feeling like I could face the world without my head covered, but how quickly my confidence dissolves.
Too long after my hair became unworkable, I got a wig. I was thrilled. I could have hair. I could have beautiful hair. I could look vibrant and somehow both younger and more grown up (and at 46, I really ought to be fully in the realm of grown up). But I am a put my hair in a ponytail and ignore it because I am a mom of small kids and don't have time for hair much less anything else about my appearance kind of gal. I almost never wear makeup. I almost never wear high heels (Sacrifice comfort and function for fashion? Not me). A wig is not as comfortable as a soft cap. A wig itches, gets in the way, requires me to have a care when opening the oven to pull the popovers out. Two year olds wrap their fingers into your hair and tug hairlines disconcertingly askew. Wigs can make my head hurt. If I am going to pull my wig off as soon as I get home, then I am going to feel more comfortable, more myself, more genuine without one.
I feel like I need to be OK with being myself in the world without a wig. I'm just not able to completely dissociate needing to put on a costume to be seen from feeling like I have something to hide. It's not that I have been secretive about my hair loss. Pretty much everyone I interact with regularly knows. I didn't want the kids to think it was something to be ashamed of, and I didn't want anyone wondering if I was sick. I just want to be OK with being me, as I am, now.
I lack the confidence to feel secure about a choice to go wigless though. It is clear my husband prefers me with hair (and while I know this is in no way a deal breaker now, I'm pretty sure he wouldn't have been the sort to overlook baldness when we were dating, which makes me feel a bit like damaged goods). Should I wear a wig to please my husband? Should I wear a wig just because I can and because if you asked 20 random people almost certainly most if not all would say I was more attractive with a wig? Should I wear a wig so no one notices? Should I wear a wig so no one wells up with misplaced sympathy? Should I wear a wig because that is what a never-rock-the-boat, respectable housewife should do?
In some ways my life has been building toward a grand defiance of shoulds. But does that mean if I walk out into the world with my bare scalp, it would be an act of defiance and therefore somehow childish?
I long for someone in my life to tell me that it is OK, that I am beautiful, that I am adored, that hair makes not one whit of difference. If that won't be happening, is it selfish of me to be as I am?
How can I feel strong and worthy if I can't be comfortable in my own skin? I want my children to see me as a capable, confident, beautiful human and not as someone who hides or doesn't take care of herself.
A year ago I was just about to realize how much hair I had lost. Crazily enough, I didn't react to a few bald patches because I had had them come and go and be inconsequential for decades. I never saw a doctor or contemplated treatment. I was not surprised to have new spots and even expected them because I had gone through another pregnancy. So when I realized one day that all the hair on the nape of my neck was missing, I was shocked and went from pulling my hair into a ponytail without a thought to wearing lots of hats and never wearing a ponytail again. I believed my hair would grow back, but this time, it just kept falling out. I can't help but suspect that this was precipitated by the most stressful couple of years of my life. I had had stress for days or weeks or even months before, but the years of sleep deprivation combined with the challenges of caring for three small children really took their toll. In fact, a part of me saw it as only fitting that my hair was falling out. It was merely my outside showing what the inside was like. And maybe that is part of my struggle now, trying to match my outside to my inside when I'm not quite sure who I am right now.
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Comment by Lexi on May 1, 2014 at 9:14pm
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Very beautifully written post. You are a beautiful person with or without hair.
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Comment by Dawn on May 1, 2014 at 10:29pm
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I just got done crying because as i was reading what you wrote i was reading my story. I am 51 and started losing my hair 3 years ago. I am almost bald now and i feel as though i have been robbed of life. I admire everyone that has come to terms with there hair loss and i hope one day i can be at peace.
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Thank you for writing such touching comments. I think you have put into words all the thoughts and feelings that anyone with alopecia suffers. I am going to show your post to my friends and my husband. Thanks so much.
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I struggle daily...a year ago I had everything not even one bald spot...and now i have no hair, one brow is almost gone, the other is extremely thin, my right eyelashes are gone, the left are part gone...I am 30 and I feel disgusting and ugly so boyish...i wear a wig and tons of make up to make my eyes look normal and feel semi normal, but will never feel like me again...at least not for awhile until I forgot the old me or in my deepest prayers it all miraculously returns..sometimes I am angry!
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Oh my goodness, you never realise until it happens to you how many people are suffering from the same problems. I have recently been diagnosed with FFA. I still really have no idea of what to expect, or how long I will be able to cover up the loss of my hair. So far it has receeded about one inch, my eyelashes are getting much shorter and more sparse and my eyebrows are diminishing!!!!! I am 59 years old, have recently lost my husband and am trying to run a very busy cafe/events bar where I am in the the front of house all the time.I am trying to stay positive, if only for the sake of my family but it is so hard some times. Friends always say to me what lovely hair I have and how lucky I am, if they only knew.!! I keep telling myself that I am lucky because alopecia is not life threatening, and having had a brain hamourage ten yars ago, I said then they could shave off all my hair if it meant I survived. I am already looking around at all the options to cover my hair loss when it takes hold and believe I will have to wear a wig to feel comfortable with myself, Gone are the days when it was only the wrinkles I had to worry about!!!! It's amazing the things that happen in your life, but perhaps these are the things that help to make us stronger.
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Jess, thank you so much for sharing your touching story. The sharing of our stories unites us all and provides us with strength we didn't even know we had. Let's take on the day as bald men and women if we so choose. Let's wear our hairpieces and hats and scarves without a care in the world. Let's just be comfortable inside and out.
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Comment by Classical Anne in NC mountains on May 2, 2014 at 10:09am
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Well said, Vicki! And, Jess, I hope you take comfort in the number of people who have already responded, who empathize and understand your sadness and fears. It truly is supportive to be in contact with others who share the many challenges of alopecia. It is not a kind disorder, but we all know brave folks who could tell us how much worse things could be. Buy yourself some beautiful scarves. There are loads online, if you're not comfortable out shopping [I could gladly link you to some sites]. All the pretty colors to choose each day make dressing more fun. But it's the 'pretty colors' inside you that matter most. Trust your inner beauty.
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Comment by Bety on May 2, 2014 at 12:16pm
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Love your post! Is like I was looking into a mirror. I hope that you get to the point where you are comfortable with yourself. I know is hard, but there is no other place for us to go. I got to the point that I only wear wigs in special occasions and hats for the rest of the time, even at work! They are really supportive and they keep telling me if you decide to go "bald" we will be there with you. I'm not there yet, but I hope to get there soon. Keep living, enjoy your family, love yourself :)
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Comment by Helena Wenzin on May 3, 2014 at 4:44am
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Oh my, I can so relate to your story. Here are some thoughts though - cause for me it has been more than 6 years now since shaving, so I had some time to think :) I go bald all the time. It is much more convenient I think, and my children don´t even think about it. In school and daycare, the other children have asked openly questions in the beginning and then, as children are, don´t think about it twice. I am sure as my children grows older, and school can get tougher, they will come across bullies trying to use my looks as a way to hurt them. But by that time I hope, me going as I am, will have given them the strength to think everyone is ok as they look.
There are however moments when I do put on a wig. (I feel like on masquerade however...) Friends weddings, big celebration parties where most people don´t know me - I don´t want to take any focus off the event. Because, yes, honestly we all know that the first thought coming to mind when people meet us - is cancer. And I can´t go around explaining to everybody that I am fine :)
I believe strongly that it is all up to us to decide whether to put our energy in worrying about the hair/no hair - or go out and just live your life to the fullest - which you can do fine without hair ;)
For me it is called perspective. Having Alopecia sucks, yes. But - you could suffer from so much worse. We do not hurt, we can do everything everyone else can. It is just hair. For me it is that simple. But I acknowledge that it is not so for everyone else, but how I wish I could help people see it as that. So you can focus on all the lovely things in your life! Life is beautiful! Go size it!
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I am overwhelmed by all of your heartfelt comments. I don't have time to respond to each and every one, but I wish I could, because I know that you all really do get it, and are all dealing with your own challenges and adjustments. It means so much to hear so much positiveness despite what we are going through. I don't think I will ever completely give up wig wearing if my hair doesn't grow back, since it is nice to be able to fit in and to have the option of pretty hair when I dress up (um, when exactly would that be?), and I am often covered up anyway because my head gets cold or I am out in the sun, and inevitably the day will come when, even if I don't decide to go publicly bald, I will happen to be outside when the UPS driver shows up, and I will just smile and go on with life. I am a confessed bad wig wearer already, since I don't keep my wig on and do things like drop a kid off for a class with hair only to return an hour later with just a cap. Oh well. :)
Thank you all again for your kind words.
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