Alopecia World
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Help?
So I've blogged something similar to this before, but I really need some of my alopecian sisters to help me out, if you can.
I'm writing a piece of theatre about alopecia. I want to tell the real stories of people living with alopecia, who have it now, who have had it, whose children have it. I want to tell your stories. If anyone's interested, I would really live to hear from you (and thankyou so much to those I have heard from already). I want to know about when you first found your patches, or something someone said that stayed with you, or how you're coping now, or your philosophy.
I know a few of you have expressed interest in this, and thankyou again, but I'm running out of time to submit my draft script. The stories don't have to be too long if you don't have time, nor do they have to be short if you feel you have a lot to say :)
but, yeah, please, inbox me :)
also, un update on the weirdness of my patches - more for my sanity than thinking anyone really cares :P
patches at the back of my head seem to be getting bigger, nearly touching my neck now. But my "hairline" - the front of my patches, seems to be going backwards. Its hard to explain - It's like I have the same amount of fuzz, but it's moving backwards down my head. Weird.
Also in about the last half hour, i've touched my eyebrow and had about 7 hairs come out. I also took off my eye-makeup and found about 5 eyelashes on the makeup-remover-wipe. :'(
I've not had my hair change this rapidly in many many years and its freaking me out. I hate that I have so little control over what it's doing. I hate that I have perfectly healthy friends who starve themselves to lose a half a kilo and complain about really trivial things. I hate that I resent my friends for doing what is perfectly normal for most people. I hate people who waste brilliant oppertunities because they have no perspective. I hate that everyone tells me i need to chill, or that I'm never relaxed, when I know that if I wasn't so controled I would shout at all these stupid people who I love so dearly and cry all the time just because I can. I hate that I'm the uptight kill-joy because I have to shoulder everybodies crap that they can't deal with so just tell me, as well as my own issues that I cant tell them because they would never understand. I hate watching people I care about be so blind to the brilliance in themselves and in their lives. I really really hate when people say that they "know exactly what I mean" when they don't, because they don't have this disease, they don't know what it feels like to be sick all the time because my immune system is so f***ed. They don't know what its like to be treated differently by people because of how you look or what they assume. They don't know what its like to see in the mirror every morning that I have absolutely no control over what is happening in my life. They don't know what it's like to have no one to talk to so you occasionally go spazzy with the blogging and digress completely from what you meant to be doing.
ahem.
Sorry about that. random outburst.
The main point is the top bit.
(ps. I know about all the positive things in my life and in myself too. This was just a moment. We need those sometimes.)
I'm writing a piece of theatre about alopecia. I want to tell the real stories of people living with alopecia, who have it now, who have had it, whose children have it. I want to tell your stories. If anyone's interested, I would really live to hear from you (and thankyou so much to those I have heard from already). I want to know about when you first found your patches, or something someone said that stayed with you, or how you're coping now, or your philosophy.
I know a few of you have expressed interest in this, and thankyou again, but I'm running out of time to submit my draft script. The stories don't have to be too long if you don't have time, nor do they have to be short if you feel you have a lot to say :)
but, yeah, please, inbox me :)
also, un update on the weirdness of my patches - more for my sanity than thinking anyone really cares :P
patches at the back of my head seem to be getting bigger, nearly touching my neck now. But my "hairline" - the front of my patches, seems to be going backwards. Its hard to explain - It's like I have the same amount of fuzz, but it's moving backwards down my head. Weird.
Also in about the last half hour, i've touched my eyebrow and had about 7 hairs come out. I also took off my eye-makeup and found about 5 eyelashes on the makeup-remover-wipe. :'(
I've not had my hair change this rapidly in many many years and its freaking me out. I hate that I have so little control over what it's doing. I hate that I have perfectly healthy friends who starve themselves to lose a half a kilo and complain about really trivial things. I hate that I resent my friends for doing what is perfectly normal for most people. I hate people who waste brilliant oppertunities because they have no perspective. I hate that everyone tells me i need to chill, or that I'm never relaxed, when I know that if I wasn't so controled I would shout at all these stupid people who I love so dearly and cry all the time just because I can. I hate that I'm the uptight kill-joy because I have to shoulder everybodies crap that they can't deal with so just tell me, as well as my own issues that I cant tell them because they would never understand. I hate watching people I care about be so blind to the brilliance in themselves and in their lives. I really really hate when people say that they "know exactly what I mean" when they don't, because they don't have this disease, they don't know what it feels like to be sick all the time because my immune system is so f***ed. They don't know what its like to be treated differently by people because of how you look or what they assume. They don't know what its like to see in the mirror every morning that I have absolutely no control over what is happening in my life. They don't know what it's like to have no one to talk to so you occasionally go spazzy with the blogging and digress completely from what you meant to be doing.
ahem.
Sorry about that. random outburst.
The main point is the top bit.
(ps. I know about all the positive things in my life and in myself too. This was just a moment. We need those sometimes.)
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Comment by Pat on March 20, 2011 at 9:00am
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That made me smile....yep I get those moments too :)
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Comment by Tallgirl on March 20, 2011 at 4:32pm
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I am currently reading Eat, Pray, Love. I think some of the insights and laughs in it are just perfect for alopecians. Chapters 50 and 60 are especially good for me, with 61-64 also good. Take a look as an author about how one woman could write with total honesty and humor.
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Comment by Georgia Gardner on March 21, 2011 at 6:19am
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:) glad to talk to folk who get it. I think everyone, even the most well-adjusted have those days.
and Tallgirl - i haven't read that myself, though I hear good things. I love books like that, that just speak to you :) very cool.
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Comment by Jessica on March 22, 2011 at 1:13am
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I get the same way, I have AU and my hair started falling out when I was 15 years old. I look at my friends and see them being "normal" talking about how should I do my hair or I hate my hair I can't do anything with it. When they say that I just want to hit them in the face. Lol...
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Comment by Dominique Cleopatra on March 22, 2011 at 7:05am
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Jessica, Let that be a lesson to you not to take the things YOU DO have for granted!
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Comment by Louise Allott on March 24, 2011 at 12:55pm
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Ooooh, gosh!! Been a while, but i totally get what you are saying. Have those days, not very often but nevertheless still do.. Still sometimes have a moment where im quite shocked that im actually bald!! Been four years with not a single hair on my body. I forget sometimes, easier for me i suppose. Am not making sense! I go about day to day not thinking about it, never really take a good look at myself in the mirror(try not to)just sort of focus on the bits im dealing with, teeth, eyeliner etc.. then every once in a while, I take a really good look and study myself.. then to ease my mind I think, we-ell! im different, unique(in my circles anyway!), nothing I can do about it, does not make me a bad person, probably makes me what I am as a person. Ive developed quite a thick skin and try not to think about it too much. As for what other people think, dont even go there in your head!! If they are harsh then they're really not the kind of people you want to know or surround yourself with and then its their loss, no?? Did not expect to be writing this but there you go, just what am feeling at the mo, sharing & caring. Lots of love to my fellow peachys xxx
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