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 Tracey on May 1, 2014 at 5:20pm
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Thank you, GardenJess, for your post. I, too, am struggling with matching my outsides to my insides. I am completely bald and have been for about a year and a half. I have worn caps mainly, but recently my mom bought a wig for me. It is nice, but in hot weather (and I live in FL), I am so uncomfortably hot and can't wait to remove it. I want so desperately to get to the point that I can go without a wig or cap and feel okay. I think it would be incredibly freeing for me to do. I'm not one who likes to stand out, and several of the reasons you mentioned are also reasons I don't do so. I see pictures of other women with alopecia without wigs and they are beautiful! It is my hope that I can reach that point as well. I'm lucky that my husband prefers my caps over the wig, so I do not have that dilemma. Thank you again for your post and good luck to you as you move forward through these issues!
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Comment by Lee on May 1, 2014 at 5:30pm
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I could have written this post! Your story is mine! We just have to keep moving forward. You kids need you.
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Comment by gt on May 1, 2014 at 5:48pm
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IMHO wear the wig when you want but for nobody but you. Most all folks are way too worried about how "they look" to you than how "you look" to them. They really don't care. They are worried about themselves and their deficiencies. Alopecia is our opportunity to rise above that common insecurity!! "Your" people love you for you, not your hair. I know its drag. I lost mine in the ophiasis pattern about 3 years ago. I shaved my head 2 years ago but started growing back what is left about 2 months ago. Before I shaved it I was pretty worried "somebody" might see a bald spot since I was doing the reverse comb-over (growing it longer in back to cover the spots over my ears and the entire backside of my head). Shaving my head let me realize that "somebody" seeing a bald spot is not worth any worry!! Being a man might make it easier for me I suppose, but men are on plenty insecure when it comes to their hair, I can assure you. You are strong, you are fantastic and you are loved! Nobody loved you "because" you had hair and those folks care no less because you don't have it now!! Being courageous is a choice. As has been said, if we don't "choose" things for are lives then the "decision" is made for us!! Lets choose the best for us!! Greg
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Comment by Plain Jane on May 1, 2014 at 5:50pm
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This is beautifully written and I felt so much empathy for you, reading it. I'm much older than you, nearly 60, but everything you wrote applies to me. Especially your feelings about wearing a wig. So uncomfortable, physically and psychologically! A few decades ago, I had three children in exactly four years. Very stressful! My hair thinned noticeably. But it grew back, kind of. Then, my husband's job took us around the world and we moved sometimes every 16 months to countries in Africa and the Middle East. Our youngest daughter had her first seven birthdays in seven different places. During this time, I occasionally felt so stressed out that I was afraid for my health. But most of the time, I deliberately chose to embrace the adventure. My attitude was the only thing I could control. Would I have developed alopecia if I had stayed in a "stress-free" rocking chair on the same front porch for twenty-six years? Who can answer that? Alopecia is a very challenging condition to live with. I've tried every prescription medicine out there, with no improvement. The kind of alopecia I have is the scarring type, so there's no hope it will ever grow back. But again, I can only control my attitude about it. To be perfectly honest, there are some days when I am in tears and I feel angry with everyone, including my husband, who has been nothing but accepting and supportive and certainly doesn't deserve to be the scape goat. Ever. But most other days, I see that this, too, is part of the adventure of my life. I choose to see it as something that will strengthen and refine me.It will give me insight that others don't have.
You ARE beautiful and I'm certain you are adored. The people who love you would love you, even if they were blind. So it's not what they SEE that makes them love you. It's very hard to focus on the UNseen in our culture. Alopecia gives us an opportunity to acquire this skill. And our lives will be richer for it.
xoxo
Jane
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So beautifully written. It is so insightful of you to realize just how much your children absorb how you handle this issues. You are a wonderful mother and person-it is reflected in every line of this. Whatever you decide, please realize you have given it so much thought and I hope you find peace with whatever seems right.
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Thank you for posting this, I have never sent a comment in before. I have had very little hair for over 3 years, I have some really nice wigs but I can't wear them! They are so itchy and uncomfortable. I wear ball caps every day to work and I feel good in them. The only thing is that I feel like I can't dress up and then put on a baseball cap. Everything that you posted sounds like the same things that I have struggled with. I don't feel pretty or sexy, and I don't know how to feel good about myself either when I look in the mirror and don't like what I see. Thank you for making me feel like someone actually understands what I am going through.
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Comment by Classical Anne in NC mountains on May 1, 2014 at 5:53pm
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GardenJess, what a well-written post you have shared! I can fully picture your present anguish, and wish I could say something magical to make your worries vanish. What I can say is that you express yourself so beautifully, you MUST be a beautiful person!
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Comment by stephanie on May 1, 2014 at 6:40pm
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I can totally relate. THis is the second time in four years that I've lost 70-80% of my hair. THe first time around I wore wigs all the time and they were uncomfortable and hot. I felt like I was putting on a costume. Now, with two older child and a 17-month-old, its just not practical anymore. The older two kids say that they don't like the wigs because I look like I'm trying to be someone else and the baby would probably try to pull the wig off in public. That would be embarrassing. Butt there's nothing like someone coming up to you asking you how long you have been in chemotherapy.I wear head wraps becasue they can be stylish, yet comfortable, but you can tell that I have no hair underneath becasue my hairline is gone. THe woman may have meant well and wanted to offer support to who she though was a fellow cancer survivor, as she admitted to me that she wears wigs, but it made me feel awkward. I told her that I had AA because its nothing to be ashamed of.
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You have put things I think and feel every day into beautiful words! It has been a year since I started wearing a wig and I am more comfortable (emotionally) wearing it exactly because I feel like it doesn't rock the boat as much as going out bald. I do not want to call attention to myself, and I feel that going out bald would do that more than wearing a wig that most people don't notice. I just went for a routine medical procedure and I did it with a scarf! It was a big step for me and everyone pretty much just thought I had cancer. I explained alopecia over and over and it wasn't so bad. I think we have to be patient with ourselves because this whole acceptance thing is a process. As the year has progressed I have shared my alopecia with more and more people, and I am just starting to wear a headscarf or hat with some friends. I do take the wig off and wear a scarf or nothing when at home. I am confident that I will continue to grow in my ability to go out in the world without a wig, although I don't see myself going out bald. I may just be very vain, but I have to do what I am comfortable with, and I know that this will change over the years if my hair never grows back. I still think I just look better with hair, and no matter how freeing it would be to go bald, I can't get there. Yet. I understand that it seems like we are in a constant struggle with ourselves! I guess it is only a struggle if you make it one. Do what feels best for now and understand that what feels best will change as you continue to grow in this process.
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Just my way of dealing...thought I would share. I went from alopecia to alopecia universalis 2010 -2011. I went from wearing a head band to a hat to cover up the hair loss...I wore extensions until I had nothing to attach them to....I used duct tape in the end (add to 100 ways to use duct tape) I bought a wig but felt when I turned my head my wig did not turn with it. I had a panic attack while out for dinner, for my birthday, first night out with a wig. I had to come home, I cried a lot that night. I am also put my hair in a pony tail kind of girl. I like to do yoga. I like to go on long walks with my dogs. I love to spend time up North. I like to swim with my head under water.
What did I do....I found a lady who made me custom wigs. The quality of the tape that I secure my wig to my head with allows me to do all the things I love to do. I can wear my hair in a ponytail. I can go out in a windstorm. My wig and I have bonded together so it feels like a part of me.
I am not embarrassed or ashamed of having alopecia. When I run into people I have not seen for years they alway remark on how good my hair looks...."it's not mine." little bit of shock but no one feels sorry for me.
I choose to wear a wig because it makes me feel like me. No one feels sorry for me >>>I would say my goals have been met.
By the way got eyelashes and eyebrows back...bonus :)
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