Alopecia World
www.alopeciaworld.com
I haven't cried this much in forever
Joe jokes with me that when I find something to obsess over, I put my heart into it. And he's probably right.
I find myself drawn to Alopecia World, eager to see what other people have to say about something I've spent most of my life trying to hide from the world. I'm OK with me and the hand I've been dealt, but such a huge part of me just wants to have hair long enough to put in a ponytail.
I look at pages in this community of beautiful, strong women so confident in themselves that they don't need a wig to feel beautiful. I know I'll never be one of those women, but I can't help admiring those women.
I read the stories of people who are newer to this community than me and cry because those fears and pains they're describing still feel all-to-new to me.
Somehow I've found validation in the feelings no one else in my life had understood until now. People who know I'm not being insensetive when I worry I look like a cancer patient or I'm not being silly when I tell people I look like a boy.
I feel like something in me is awakening. I accepted my life with AU a long time ago, but it was a silent acceptance like something I felt like I had to do for me. But now, I see all this whole world of people using their stories to make a difference in the lives of others, and I admire them too.
I've been surrounded my whole life by people who love me and tried their hardest to be there for me when I'd cry because there wasn't enough water pressure in the bathroom sink to rinse the shampoo out of my wig. Or people who held my hand as I cut the last strands of my real hair off for the first time. And they're wonderful people, without whom I probably would have gone down a horrible sprial of emotions.
Still, I always felt alone. Unless they've been there no one can understand how deep it hurts when you realize your bald spots have started showing through your ponytails or how shocking it is to see a picture of yourself on what you thought was a good hair day only to see a giant bald spot staring back at you.
I guess what I'm saying is no matter how much I think I've grown to accept AU's role in my life, coming across this community has been wonderful therapy for me.
I find myself drawn to Alopecia World, eager to see what other people have to say about something I've spent most of my life trying to hide from the world. I'm OK with me and the hand I've been dealt, but such a huge part of me just wants to have hair long enough to put in a ponytail.
I look at pages in this community of beautiful, strong women so confident in themselves that they don't need a wig to feel beautiful. I know I'll never be one of those women, but I can't help admiring those women.
I read the stories of people who are newer to this community than me and cry because those fears and pains they're describing still feel all-to-new to me.
Somehow I've found validation in the feelings no one else in my life had understood until now. People who know I'm not being insensetive when I worry I look like a cancer patient or I'm not being silly when I tell people I look like a boy.
I feel like something in me is awakening. I accepted my life with AU a long time ago, but it was a silent acceptance like something I felt like I had to do for me. But now, I see all this whole world of people using their stories to make a difference in the lives of others, and I admire them too.
I've been surrounded my whole life by people who love me and tried their hardest to be there for me when I'd cry because there wasn't enough water pressure in the bathroom sink to rinse the shampoo out of my wig. Or people who held my hand as I cut the last strands of my real hair off for the first time. And they're wonderful people, without whom I probably would have gone down a horrible sprial of emotions.
Still, I always felt alone. Unless they've been there no one can understand how deep it hurts when you realize your bald spots have started showing through your ponytails or how shocking it is to see a picture of yourself on what you thought was a good hair day only to see a giant bald spot staring back at you.
I guess what I'm saying is no matter how much I think I've grown to accept AU's role in my life, coming across this community has been wonderful therapy for me.
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Comment by BTB (John) on October 4, 2008 at 7:32am
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Hi Steph I remember when Pat was diagnosed she was the same and I said the same as Joe which on reflection was pretty insensitive but to be honest it never bothered me that it was happening. Pat looked as beautiful as ever and she still does but I never quite explained the way I felt succinctly. It has been years for us now and Pat has become very confident and self assured bur she does have times when like all of us she wishes it was different. I wont say it will get better or any of those glib sayings because I dont know if will get better for you. I do know it has got better for us and I hope that gives you some idea of how things can go Pat is on this site and would love to hear from you John xoxo
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Comment by Esther on October 4, 2008 at 11:31am
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This is therapeutic. Never have I been able to share so openly with others what it feels like to live with alopecia everyday of my life...and the other person completely understanding what I mean.
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Comment by Sarah McIntosh on October 4, 2008 at 11:41am
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This site gives me strength to try to live my life more openly with Alopecia everyday.I think that this site provides each of us the encouragement to live in whatever way we chose whether it be bald or with a wig.
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Comment by jamie1 on October 4, 2008 at 10:05pm
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The folks in our little community are such great support. For the first time in my life, I don't feel alone with alopecia. Sometimes, I think the silence and isolation are the worst aspect of this condition. Today, someone laughed at me because of my hairloss. Certainly, this type of behavior is not new and not reserved for alopecians. I've seen amputees mocked. However, it is such a comfort to stop by this site and drink from this well of positive energy and acceptance
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Comment by Jenn on October 6, 2008 at 9:17am
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this sit has been a huge blessing to me when i need it the most. i guess because this is so very foreign to me that i have learned so much from other's experiences and just feel like i am not alone in this for the first time since it began. i appreciate everyone's stories and encouragement.
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