Alopecia World
www.alopeciaworld.com
New to this site - Would like to share my story
First off, I would like to say that this is a wonderful site. A few weeks ago I thought to myself "hm, I wonder if there was a social site like Myspace or Facebook but only for people dealing with hair loss.". Well what to do you know, I come across this site today as I am searching for more info looking through Google and I quickly wanted to join. Well anyways there is so much that I would like to share that I don't know where to start. Well okay, I first encountered this disease when I was in the sixth grade. Which is about 4-5 years ago. My mom took me to the barber to get my routine buzz cut. I'm a filipino/Native american. Which means I have really THICK hair. Well after I get my cut I head home. A few hours later I walk past my sister who is sitting in the living room and she noticed the back of my head had bald patches. She showed my parents and they had no idea what it was. They just figured the barber made a really stupid mistake and just buzzed me bald in a few places. So a few weeks later the hair did not grow back. Then my mom decided it was time to vist the doctor. The doctor told me that I have AA. The doc said it is unpredictable diesease. I remember his exact words. "It may not grow back ever. It may grow back and then fall out,and then it may grow back and never fall out again.". He then explained the treatment options.
My mother decied it was best to just wait and see what happens.
Now on to the social experiance. I was in 6th grade back then. I honestly didnt care what other kids thought. The kids would used to say some hurtful stuff. But i didnt let it get to me. I didnt let any of it stress me out. I was little kid. It did'nt really bother me. Over the next few months. The hair grew back. By the time 7th grade started. I had a full thick head of hair.
Now lets head 5 years into the future. I am now a 16 year old Junior in High School. I am now dealing with this disease once again. But now I know the cause . and it is the STRESS. And let me tell you why. I am a milatary brat. Almost everyone in my family is, or was in the US Navy. WE would movve every 3-5 yers or so. But mainly it is back and forth between Hawaii and California. The stress started back in Hawaii. I was getting ready to leave my friends. I was really sad and a little depressed. ITs hard to leave so many friendships behind espicially at my age. Ask any teenager who has ever had to transfer to a new highschool. It is a really hard hard thing to do. When we got to California in athe summer of last year, I was really nervous about going to school on the fisrt day and not having any friends because I was new. Well, as weeks went by, I made a ton of friends and was fitting in with the kids pretty well. I had all all the friends I wanted and cared about, I had the best report card that I have had in my whole high school career, and the best thing of all. I was on the schoools Varsity basketball team. Life was going good.
But sooner later, I got some very upsetting news. MY parents had purchased a house down in San Diego. Which was 300 miles south of where we lived. That only meant one thing. I would have to leave my frineds and school behind once again. And start this process all over again. Which only = STRESS STRESS STRESS!
BEfore I moved down to San Diego, my friend noticed a little tiny bald spot on the back of the head above the starting hairline. It was really small adn maybe about the size of a pea. So i just ignored it. But as soon as we started to move and pack up our house to head to our familys new purchased home, I was once again feeling sad and depressed about dropping everything and leaving it all behind. Don't get me wrong, I was very happy about our familys purchase on the house. Its a very big deal. But i wasnt happy about going to a new high schoool AGAIN. Which made me more stressed just by thinkg of it.
By the time I got to my new high school, the bald spot was notcible but only by a little. I would just deal with it. But as time passed. I got a lot more stessed out. I dont really like my school. I have a girlfriend. But I dont have a full cast of friends and popularity as i did before. I was homesick. The more stressed I got, the bigger the spot would become. First it started out as the size of a pea, then it got tot the size of a quarter, now, its as big as a 50 cent coin.
I know I should still be grateful for at least I still have a full head of hair. As there is people on this site who are completly bald. So this one bald spot shoudlnt be something that i can be complaining about because there are others who are in a much worse position. But to me. it is. I am so embarressed to walk around school. Everyday I wake up I have to get ready for a battle with embaresment. It has affected my life. Its really hard for me espicailly now that i am in high school. Kids in high school are BRUTAL. With a bunch of drama and they dont care how you feel. No one has said anything really hurtful to me. But I know for a fact that it gets peoples attention. It really does make me insecure.I walk with my chin tilted up thinking that is isnt noticible that way. But it makes no differemce. I wear hoodies to cover it up. I sit in the back of the classs.so no one will see. I dont want to get up and ask the teacher for help becasue I am ashmed of people seeing. I dont go out and try to make friends around school. I feel that they will look at me different. When people ask me why I have a bald spot, I jsut make up a story and say it is a scar. I dont want to tell them I have alopecia becasue I dont want the m to think "ohhh,... so you have a "disease"
The more I think abot it, the more stresssed i become. Which only makes the spot even bigger. When i first got Alopecia when I was in middle shcool. I dindt really care. Therfore I didnt get stressed and that s why I got my hair back. There is not a damn hour in the day where I do not think about the spot behind my head. I ask god " Why me,... Why me." I read online somewhere that only 0.01% of men have the disease. And to me that just confuses me.
But i guess, there is some postive things from this. I have matured through this disease. I am one who strongly believes in KARMA. Before I would always make fun of people and crack jokes on everyone. Now I watch what i say becasue i dont want it coming around on me. I am more kind now. But still yet. I am not the same me. I dont want to be social anymore,. I come home straight afterchool becasue i dont want to be seen. but there still is hope. I just need to lower the strsss and calm down. If things dont improve. I will seek the options that are avaliable.
Well I think that is all I wanted to share. Thank you very much for taking the time to read my story. I think this site is great and I'm very happy I found it. Now I don't feel alone.
Few quick questions.
1.As you read in my story, I have gotten alopecia before, and it has grown back. So does that mean that it is bound to grow back again since it has before? Or is it still unpredictable?
2. I don't know if I want to know the answer to this one but I will ask anyway. For about a month I have had a few of those explamation point hairs on the side of my head. I read that those hairs are getting ready to fall out. But it has'nt, I've gotton a few haircuts but the hair still remained intact and it has'nt fallen out. So whats up with that?
My mother decied it was best to just wait and see what happens.
Now on to the social experiance. I was in 6th grade back then. I honestly didnt care what other kids thought. The kids would used to say some hurtful stuff. But i didnt let it get to me. I didnt let any of it stress me out. I was little kid. It did'nt really bother me. Over the next few months. The hair grew back. By the time 7th grade started. I had a full thick head of hair.
Now lets head 5 years into the future. I am now a 16 year old Junior in High School. I am now dealing with this disease once again. But now I know the cause . and it is the STRESS. And let me tell you why. I am a milatary brat. Almost everyone in my family is, or was in the US Navy. WE would movve every 3-5 yers or so. But mainly it is back and forth between Hawaii and California. The stress started back in Hawaii. I was getting ready to leave my friends. I was really sad and a little depressed. ITs hard to leave so many friendships behind espicially at my age. Ask any teenager who has ever had to transfer to a new highschool. It is a really hard hard thing to do. When we got to California in athe summer of last year, I was really nervous about going to school on the fisrt day and not having any friends because I was new. Well, as weeks went by, I made a ton of friends and was fitting in with the kids pretty well. I had all all the friends I wanted and cared about, I had the best report card that I have had in my whole high school career, and the best thing of all. I was on the schoools Varsity basketball team. Life was going good.
But sooner later, I got some very upsetting news. MY parents had purchased a house down in San Diego. Which was 300 miles south of where we lived. That only meant one thing. I would have to leave my frineds and school behind once again. And start this process all over again. Which only = STRESS STRESS STRESS!
BEfore I moved down to San Diego, my friend noticed a little tiny bald spot on the back of the head above the starting hairline. It was really small adn maybe about the size of a pea. So i just ignored it. But as soon as we started to move and pack up our house to head to our familys new purchased home, I was once again feeling sad and depressed about dropping everything and leaving it all behind. Don't get me wrong, I was very happy about our familys purchase on the house. Its a very big deal. But i wasnt happy about going to a new high schoool AGAIN. Which made me more stressed just by thinkg of it.
By the time I got to my new high school, the bald spot was notcible but only by a little. I would just deal with it. But as time passed. I got a lot more stessed out. I dont really like my school. I have a girlfriend. But I dont have a full cast of friends and popularity as i did before. I was homesick. The more stressed I got, the bigger the spot would become. First it started out as the size of a pea, then it got tot the size of a quarter, now, its as big as a 50 cent coin.
I know I should still be grateful for at least I still have a full head of hair. As there is people on this site who are completly bald. So this one bald spot shoudlnt be something that i can be complaining about because there are others who are in a much worse position. But to me. it is. I am so embarressed to walk around school. Everyday I wake up I have to get ready for a battle with embaresment. It has affected my life. Its really hard for me espicailly now that i am in high school. Kids in high school are BRUTAL. With a bunch of drama and they dont care how you feel. No one has said anything really hurtful to me. But I know for a fact that it gets peoples attention. It really does make me insecure.I walk with my chin tilted up thinking that is isnt noticible that way. But it makes no differemce. I wear hoodies to cover it up. I sit in the back of the classs.so no one will see. I dont want to get up and ask the teacher for help becasue I am ashmed of people seeing. I dont go out and try to make friends around school. I feel that they will look at me different. When people ask me why I have a bald spot, I jsut make up a story and say it is a scar. I dont want to tell them I have alopecia becasue I dont want the m to think "ohhh,... so you have a "disease"
The more I think abot it, the more stresssed i become. Which only makes the spot even bigger. When i first got Alopecia when I was in middle shcool. I dindt really care. Therfore I didnt get stressed and that s why I got my hair back. There is not a damn hour in the day where I do not think about the spot behind my head. I ask god " Why me,... Why me." I read online somewhere that only 0.01% of men have the disease. And to me that just confuses me.
But i guess, there is some postive things from this. I have matured through this disease. I am one who strongly believes in KARMA. Before I would always make fun of people and crack jokes on everyone. Now I watch what i say becasue i dont want it coming around on me. I am more kind now. But still yet. I am not the same me. I dont want to be social anymore,. I come home straight afterchool becasue i dont want to be seen. but there still is hope. I just need to lower the strsss and calm down. If things dont improve. I will seek the options that are avaliable.
Well I think that is all I wanted to share. Thank you very much for taking the time to read my story. I think this site is great and I'm very happy I found it. Now I don't feel alone.
Few quick questions.
1.As you read in my story, I have gotten alopecia before, and it has grown back. So does that mean that it is bound to grow back again since it has before? Or is it still unpredictable?
2. I don't know if I want to know the answer to this one but I will ask anyway. For about a month I have had a few of those explamation point hairs on the side of my head. I read that those hairs are getting ready to fall out. But it has'nt, I've gotton a few haircuts but the hair still remained intact and it has'nt fallen out. So whats up with that?
Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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Hi Gabe,
The most debilitating thing about having alopecia is not the alopecia. It's having a life of secrecy about having alopecia. The best thing you can do is know what it is and what it isn't. Then just mention to friends in a reassuring way, they can't get it from you. Most people just don't care all that much about someone else's hair; but they do care when their friend is less social, less involved, far less happy than they should be.
Try telling a few people you know best. it gets easier the more you do it. Don;t assume they will be rejecting.Assume that they're curious and interested in you. After all, would you like a friend less if he told you he had alopecia? So you can be pretty sure that he feels the same way about you. He likes you. Period. Your hair is not a friendship breaker. Give people the benefit of learning to understand it by trying to give them more information. No better time to start than the present time. If you have the pattern where it will come and go, then you can start practicing the explanation since you might find you have to do it repeatedly over the years. And you don't want to look back and say that you compromised on our education and learning all because you didn't want to talk to your friends about a hair problem that you have no reason to be ashamed of.
To answer your question, no one knows for sure about the course of the condition. But if you've had regrowth there's a good chance that's your pattern. The largest percentage of aggressive cases are in very young children where all the hair is lost very quickly with no regrowth. Those cases have the poorest prognosis.
Try telling someone new each day. And if someone is not understanding think of it as their problem, not yours.
For someone your age you've had to deal incredibly well with so many changes that you had no control over. They've made you stronger than you might realize. Everyone who switches schools that much has insecurity about forming attachments since they might be broken. So be sure that the alopecia is not a way of keeping distance between you and new friends..... when it could actually be something that brings them closer into your confidence.
Thea
baldgirlsdolunch.org
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Permalink Reply by Tony on
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As Thea said, no one knows for certain what course alopecia will take. Personally, I'm learning that it is what it is. I can't stop it...I can't change it...I can't wish it away. But I can learn to accept it and move on with my life rather than let it rule what I do or who I am.
Our stories may be different than yours yet we all understand what it is like to be an alopecian. Welcome Gabe! I hope you like it here.
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