Alopecia World
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Irony
Day 5 of collecting hair and today's pile is biggest of all. I uploaded a profile photo, and you can't *really* tell how much hair I've lost thanks to the damaging power of hair bleach. I think my hair looks scraggly as I don't dare to style or even brush it all that much- just let it air dry as it is. But at this point I'll take scraggly hair or my natural dark or my abused blonde or whatever I'm allowed to keep.... just please don't take any more away.
Irony, 3 months ago I bought a dark brown wig for fun since I get stared at a lot here (in Asia) for my pale blonde hair. I thought it would be fun to wear. Well, it looks like I'll have to try it out sooner than later.
Irony, a week or so before my hair started to fall out I bought a slew of hats online. Summery cotton in pastel colors; wide-brimmed straw with sashes; a quirky orange/brown plaid to wear into fall. Now I find myself resentful of their presence in my house. Or grateful. Or resentfully grateful.
I also bought some dresses and things online "before"... they arrived after my hair loss started. I don't even want to think or look at clothes any more. Makeup, clothes, who cares when it looks like my hair is all going to disappear? I haven't even tried on the dresses yet...
I took tweezers and pulled out a few broken hair stumps. They all look different. A couple seem to be "exclamation", fading in pigment. But mostly they just look like deformed hair, twisted and gnarly. I try to tell myself there's a small hope it's scalp ringworm. Who hopes for ringworm? I do... I'd do anything for a ringworm diagnosis.
Irony, they say stress can aggravate hair loss. For the last half-year I was extremely worried over work issues and not able to sleep at night . But since my hair started falling out, I couldn't care less about work. Yes, I admit I am irresponsible and vain. I should be grateful I am healthy and it's not a vital organ that's been affected, just my hair. But I'm not. Yesterday I saw a photo resume for an architect my boyfriend was thinking of hiring. All I could look at was her shiny black hair, falling into her eyes as she looked into the camera. "Don't hire her," I wanted to say, but of course I didn't. I pretended to be interested in her AutoCAD experience instead.
I'm paranoid. I check the hair on the rest of my body to see if it's all growing. It seems to be normal, which makes me relieved and resentful at the same time. Why my head hair? Is it because I've been so vain? True, I've always loved dressing up and playing with makeup and hair even way past childhood. But I like to think I have generally not been a superficial person. I guess everyone is judgmental to some extent, it's a basic survival instinct, but I've never treated anyone unfairly for their looks or color or disability or money or religion or whatever. Really, I haven't! So why are you doing this to me?
Irony, they say it's good to have a lot of friends so you can lean on them in hard times. But I don't want any of my friends now. I want to be isolated. I know they are hurt because I won't call or IM or e-mail back.
I would have isolated myself from my boyfriend as well, but since we live together, he has seen my entire hair loss journey so far. To be completely honest, he has been more wonderful than I'd ever expect and I have been disgustingly unfair. I get upset at the literal drop of a hat and cry with no notice. I won't let him touch me for fear he'll accidentally pull out a hair, even though I'd spend hours entranced in the horror of pulling out my hair if I didn't tie it up. I make him look at my scalp countless times a day and then yank on his hair to see how many come out in comparison. I ignore his reassuring words. I forget to be grateful that I have someone who, when I initially believed it was ringworm, didn't seem grossed out and was still willing to share pillows.
Irony, once upon a time in misery I told a friend I'd like to die. He said, "You can't die. You spend all that money to cut and dye your hair... what a waste it would be if you killed yourself." At the time he was trying to use humor to diffuse my bad mood, but years later I'd still remember his comment amusedly.
I'm still not ready or willing to accept that I might really lose all my hair....
Irony, 3 months ago I bought a dark brown wig for fun since I get stared at a lot here (in Asia) for my pale blonde hair. I thought it would be fun to wear. Well, it looks like I'll have to try it out sooner than later.
Irony, a week or so before my hair started to fall out I bought a slew of hats online. Summery cotton in pastel colors; wide-brimmed straw with sashes; a quirky orange/brown plaid to wear into fall. Now I find myself resentful of their presence in my house. Or grateful. Or resentfully grateful.
I also bought some dresses and things online "before"... they arrived after my hair loss started. I don't even want to think or look at clothes any more. Makeup, clothes, who cares when it looks like my hair is all going to disappear? I haven't even tried on the dresses yet...
I took tweezers and pulled out a few broken hair stumps. They all look different. A couple seem to be "exclamation", fading in pigment. But mostly they just look like deformed hair, twisted and gnarly. I try to tell myself there's a small hope it's scalp ringworm. Who hopes for ringworm? I do... I'd do anything for a ringworm diagnosis.
Irony, they say stress can aggravate hair loss. For the last half-year I was extremely worried over work issues and not able to sleep at night . But since my hair started falling out, I couldn't care less about work. Yes, I admit I am irresponsible and vain. I should be grateful I am healthy and it's not a vital organ that's been affected, just my hair. But I'm not. Yesterday I saw a photo resume for an architect my boyfriend was thinking of hiring. All I could look at was her shiny black hair, falling into her eyes as she looked into the camera. "Don't hire her," I wanted to say, but of course I didn't. I pretended to be interested in her AutoCAD experience instead.
I'm paranoid. I check the hair on the rest of my body to see if it's all growing. It seems to be normal, which makes me relieved and resentful at the same time. Why my head hair? Is it because I've been so vain? True, I've always loved dressing up and playing with makeup and hair even way past childhood. But I like to think I have generally not been a superficial person. I guess everyone is judgmental to some extent, it's a basic survival instinct, but I've never treated anyone unfairly for their looks or color or disability or money or religion or whatever. Really, I haven't! So why are you doing this to me?
Irony, they say it's good to have a lot of friends so you can lean on them in hard times. But I don't want any of my friends now. I want to be isolated. I know they are hurt because I won't call or IM or e-mail back.
I would have isolated myself from my boyfriend as well, but since we live together, he has seen my entire hair loss journey so far. To be completely honest, he has been more wonderful than I'd ever expect and I have been disgustingly unfair. I get upset at the literal drop of a hat and cry with no notice. I won't let him touch me for fear he'll accidentally pull out a hair, even though I'd spend hours entranced in the horror of pulling out my hair if I didn't tie it up. I make him look at my scalp countless times a day and then yank on his hair to see how many come out in comparison. I ignore his reassuring words. I forget to be grateful that I have someone who, when I initially believed it was ringworm, didn't seem grossed out and was still willing to share pillows.
Irony, once upon a time in misery I told a friend I'd like to die. He said, "You can't die. You spend all that money to cut and dye your hair... what a waste it would be if you killed yourself." At the time he was trying to use humor to diffuse my bad mood, but years later I'd still remember his comment amusedly.
I'm still not ready or willing to accept that I might really lose all my hair....
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Comment by Jane on August 6, 2010 at 1:27pm
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I'm sitting here crying while reading your blog. I have finally at least decided I need to see or read other people's stories too. I, like you, have not truly accepted this. I am losing so much hair as we speak and I just can't seem to get a handle on it. WHY? I feel so sick about my hair loss and I don't know what I can do to feel good again.
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Comment by Mary on August 6, 2010 at 6:44pm
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Read my page...you may find some blogs or photos or videos that will help. I was where you are not long ago, and I obsessed about my hair loss and thought my life would be over if I lost all my hair. I did, and it isn't! Hang in there.
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Comment by Nari on August 7, 2010 at 2:11am
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Aww... Jane. I'm sorry I made you cry. I hope your hair comes back. Sometimes I read others' stories and feel scared... seems like the people who have had their hair return don't write as much as those of us who are still losing. I guess that's to be expected. But many sources online say that a good number of people will have full regrowth of hair, so please remember that!
Mary, thank you for your comment. You seem like a strong woman, and I can't tell you how much I admire that. Unfortunately, I still feel like my life is ending. I can't picture a life without hair at this point. I'm sorry if that's an offensive thing to say, but please remember that I'm less than two weeks into this...
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TOTALLY understandable! Remember, I've been there. Please just take it a day at a time. When I was experiencing my rapid hair loss, AW didn't yet exist, and I know how much it would've helped me....please rely on your friends here for support.
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Comment by Julie Koch on August 8, 2010 at 5:05pm
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Hey Beautiful! I read your story today and it sounds so much like mine and every worry, fear, concern, vanity issue, is so real. I felt it and feel it too! You are so lucky to have a boyfriend that is there and it seems that he supports and loves you no matter what! That is truly a blessing... Mine left me the day after I told him about the hair. I too am SCARED to let anyone touch me, hug me, walk by me, etc... because of the fear that they will accidently pull my hair out. I went to Illinois for a reunion with some relatives I hadn't seen in 20 years and they came up to hug me and I stuck out my hand and said I can't be touched right now because of the scalp pain. I filled them in about my situation before I saw them so that they were aware if I wasn't the same person they remembered. How sad is that? I am afraid to express love physically because of hair. BUT, I have never been a vein person either and I think this whole experience just makes you realize things that you used to never think about or never appreciated. I ALWAYS had loved my hair but it was never right...I had to cut it, grow it, dye it, to make myself fit an image and I never just appreciated the fact that I was born with thick, long and healthy hair. NOW, I look back and if I could go back in time to those days of healthy hair, I would never take for granted what GOD gave me on my head.
I have completely isolated myself as well. Used to love going out to the bar to socialize or anywhere! NOw I ignore my friends and I ignore phone calls just to avoid the shame of having people see me as sick. I have been seen as "sick" since the age of 12 because of fighting anorexia for 18 years and I don't want people to think that I am losing hair because I just won't eat and gain weight to be healthy. Sometimes I have the attitude of "I DON"T CARE ANYMORE!" and just want to shave it off to get the process over with or I have even contemplated suicide far too many times. In fact, my doctors would like me in the psych ward right now for some intensive therapy...which may not be a bad idea.
I too envy others hair and I can't stop raking my fingers through my hair and holding my breath to count the hairs that came out. ALthough my hair loss has been slower (30% diffuse loss over 5 months), I still go through the same emotions as anyone else on this site. YOU ARE NOT ALONE! Before I found this site, I was about ready to end my life. I still do at times but wait and think it over and come on this site and see how absolutely BEAUTIFUL everyone is! Hair or no hair, we are beautiful. If you ever need to talk, I am HERE. Always think before reacting...This has saved me many times over. You have people that love and care for you including EVERYONE on this website! Love you sweetie and keep that beautiful chin up!
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For what it's worth to anyone, I just got home from performing at an art reception. I was out in in front of lots of people in a crowded art gallery plaza, bald, for about 3 hours. I was cool and comfortable. People sat and enjoyed the music. No one recoiled in horror at seeing a bald woman. People compimented me on my drumming. I felt fine. I'll post a few pics in a day or so...don't have the camera at home right now.
It took me a couple of years to get where I am, but the fact that I don't have any hair just isn't important. I wish I knew what to say to you, but all I can say is that I haven't let my lack of hair stop me. Life goes on.
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Wow, Mary, I reiterate what I said about admiring your strength. :) Even before my hair loss, I'd never "recoil at the horror" of seeing a bald woman, haha.... but I guess I just never imagined that the bald woman could be me...
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