Alopecia World
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My update
Writing has always been the only comfort to me. I turn to it in times of happiness so it only makes since for me to call upon it in times of sadness. It's been awhile since I have been on Alopecia World. Mostly because when I come to this site I am reminded more of how real my condition is (as if looking in the mirror and seeing it every single day isn't enough) But I find that this site, regardless of how hurt it may make me feel at times, also serves as the only place I feel "accepted". I can compare it to going over to a family member's home whom you're not all that fond of but yet...when your there...you do feel a bit at ease for some reason. That may sound complicated, but it makes since in my head so that's all that matters. My eyebrows have begun to fall out even worse now, and my eyelashes aren't far behind. I've decided not to go to my own high school graduation next Friday because I just can't deal with the embarrassment. I know I'm supposed to be strong, but honestly...I have endured MANY hardships in my short 18 years of life and this by far has to be the worst of them. Yes...I know...i could be dealing with something more life threatening, but in some ways this condition IS life threatening for me. I've had to miss prom, baby showers, numerous hangout sessions with friends, and many other occasions just because i feel too ashamed of what is happening to me. Not to mention, I have a special man in my life whom i am afraid to grow close to out of fear that he won't want me if this condition runs it's course and takes away ALL my hair. I think the worst part about it may be the fact that i don't know ANYONE who has been through or currently dealing with this condition who can comfort me and offer some support. At times i just want to be held, for I feel very alone and isolated. And even though this site was created for people like me, I can't help but to still feel so disconnected. Plus, there are no alopecia support groups here in the DC, Maryland and Virginia area that i know of, so that makes me really feel like i'm the ONLY ONE with these issues. I struggle with staying alive everyday, and i'll be real about it, suicide has crossed my mind quite a few times. But something...something is preventing me from taking those pills and just saying forget it. I'm not sure what's holding me here, maybe it's God, but whatever it is must be content in seeing me suffer like this, which is something I feel like I don't deserve. Anyways...to anyone that is reading this, if you ever want to converse, my email is soulpoet1219@gmail.com, i know it would make me feel better to form a bond with someone who knows how it feels to..."shed".
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Comment by Tallgirl on May 19, 2011 at 11:29pm
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Find support groups or phone support on www.naaf.org
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Comment by Danielle Pace on May 20, 2011 at 8:54am
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Thanks so much you guys and Jayne I will check my email now.
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Comment by Lili Añel (aka Eulalia) on May 20, 2011 at 4:51pm
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Danielle I am sorry you feel such sadness. You are so young. I am sorry you have decided not to attend your graduation. This is one of life's milestones. You may look back one day and regret not having gone.
When I met my husband 7 years ago I told him about my alopecia. I showed him my then, "small" spots that my hair covered nicely. I told him "one day I will lose all of my hair". We got married. This past February 2011 most of my hair fell out. I showed him how bad my spots were and that I was going to have what was left shaved-it wasn't much, looked like a nappy birds nest of hair.
There is always the chance someone will "change" because we "change" for whatever the reason. And if they change for the worse, they didn't really love you. But if someone truly loves you and you give them the chance by being completely open, you may be pleasantly surprised.
Your love of self, your "esteem" comes from you, not from your hair. Love yourself. Please go to my page and check out my photos. I am a musician, I am in the public eye. When I took what was left of my hair down I was scared I would lose my audience, that perhaps they'd laugh. They didn't. They have embraced me and have been supportive. I can only be me. You say you are from the DC/VA/Maryland area? Have you ever heard of a music venue called "The Birchmere"? I'll be playing there in August. I would love for you to come as my guest (bring someone along as well).
My heart goes to you that you find your "self" and become accepting so that you can enjoy life as the vibrant, intelligent and beautiful young woman you are. Think it over, go to your Graduation - you WON'T regret it.
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I saw an episode of S _ _ and the City where Samantha lost her hair from chemo, and didn't know what wig to buy. She finally showed up at her boyfriend's opening event with a totally unreal hair-colored wig, so the attention was more on her obvious outrageousness with COLOR rather than on the fact that it was a wig. Maybe you can be remembered at events for being bold and smiling, eh?
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Wow I saw that sex and the city episode! You are clever to bring that up, it def made ne smile, and Lili I know if the birchmere! Oh... It would warm my heart to see you
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Comment by Alexis on May 20, 2011 at 9:26pm
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I know what u mean. I was around ur age when I started losing my hair (16, well close to it lol) I'm 20 now and I live in washington,dc ( for school) I lost most of my hair in college when I was 18 and in Miami at the time. Now that Im in dc, i also feel like NO ONE has this "disorder", and there are really no support groups in the dmv area. Everything u just wrote describes how I felt at ur age and how I still feel sometimes, but pleassseeee DONT miss out on ur high school graduation!!!! thats one of the most important events in your life!! You deserve to walk across that stage and get the diploma you worked 4 years for !
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If people can grab attention at graduations doing somersaults, blowing bubbles and throwing paper airplanes, I guess anything goes!!! Get creative! What are they going to do...SUSPEND you?!!
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