Alopecia World
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One step closer to making a difference
After going from having small bald patches that would grow back over a few months, to losing 98% of my hair and half an eyebrow—the journey has been far from easy. I look back now, and cringe over how I would stress out when I discovered tiny little patches that were covered by the thick head of hair I once had.
How I would whinge because my hair was too thick, boring and normal when I was younger, along with other image issues.
How I would kid with my best friend whether he'd still love me if all my hair fell out—never giving a second thought that it might actually happen.
And then a really cruel thing happened. I finally was happy with myself and the way I looked, finally feeling good about my image and the way I presented myself. Finally, I felt like life was getting started. And then all of my hair fell out.
It fell out all over my shoulders throughout the day, clumps would come out tangled through my fingers in the shower, I would wake to find my pillow covered in hair. What else can I say? It was traumatic.
I wore a beanie everyday, bringing to the front what I had left of my lovely long brown/orange tinged hair, disguising my alopecia.
I went to hair clinics, dermatologists, doctors, hair specialists. All to tell me, that my hair may or may not grow back at all, and that I was the strangest case of Alopecia Areata they'd seen.
I suffered (and still to this day suffer) from chronic depression, panic attacks, and anxiety, not wanting to face the world, consumed in my hairloss and 'ugliness'.
Then I found Alopecia World, and everyone here; that felt the same as I did, and been through what I had been through. Suddenly I felt beautiful.I realised that my statements, and poetry inspired others here, and that there are so many of us struggling with this auto-immune disease.My personality and soul had been so smothered by sadness and grief from losing my hair, that I had forgot what it meant to be me.
After a long time of secrecy, and hiding one day I decided enough was enough. Here I am trying to inspire others, and only my closest friends and family even knew I was bald. So what did I do, you may ask.
I bought a long wig (drastically different to the short one I had been wearing for the past year), conjured up a little statement, took a photo and posted it on Facebook. This is what it read:
So after a year of hiding myself, I thought I ought to introduce myself proper like to ease some minds.
Hello, I'm Amy-Rose.
I have Alopecia Areata.
Incurable (so far) Auto immune disease.
I buy really expensive hair so I can look like you all.
Don't like it? I don't really care.
Want to know more? PM me.
Oh heeeey long hair.
All I received was love, support, and lovely compliments from everyone I know. It made me feel accepted, it made my heart glow.
Here I am today; bald, wearing wigs, turbans, hats, and drawing on eyebrows, I'm finally happy—and everyone knows it.
And for anyone struggling themselves, know that you are never alone.
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Comment by Casey on May 22, 2013 at 2:55pm
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AMAZING!
Where did you get that awesome long hair?
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Comment by AZMom on May 22, 2013 at 3:07pm
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This could be my story as well and you are a brave young lady to take charge and move on! I think your hair looks lovely--what are you wearing? I also find that it is easier if my friends and family know about my alopecia--that way I don't feel like I am trying to hide anything.
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Comment by Bonnie Fimiano on May 22, 2013 at 3:11pm
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Amy-Rose,
My son is going to be 12 and he has been bald for a year and a half. He has had his struggles in the beginning, I can't lie. He had so many treatments, needles, medication and experimental things done to his head. Then he said 6 months ago, NO MORE! He has a personality larger than life. I know he is a boy and it is much different than being a girl. I have 2 sons and an 18 year old daughter. My point it, he has told me, he will not be defined by his hair. If people like me and want to be my friend it is because of me, not my hair. He is an amazing athlete, has the biggest heart and most of all, he is confident in his heart of who he is. He is an inspiration to our family and many people that he goes to school with. Check out his youtube video "Alopecia awareness"
Beauty comes from within and shines bright like a diamond and that is the motto in our house. We have no idea what the future holds, but we take one day at a time, one comment at a time, one stare at a time and one question at a time. Know that God makes everyone in his own special way! You are beautiful inside and out. Continue to shine bright like a diamond!
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Comment by Dena on May 22, 2013 at 4:14pm
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My 6 year old daughter lost all of her hair, eyebrows and eyelashes over Christmas this year. At her age she is adjusting well, but I am still nervous about the future. I am so glad that this site exists. We don't know any other people with Alopecia, but luckily I know I can always bring her here for inspirational stories if she is struggling. It really makes a difference when people open up and share their stories.
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I have felt every feeling you have felt. We probably all have. Be proud of yourself. And, you are beautiful, inside and out.
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Comment by Wendy Coco on May 22, 2013 at 4:26pm
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Such courage, very inspiring and educational!!!
Soooo many people don't know what Alopecia is, but now they do!!!
I have had Alopecia Universalis since I was 3 years old and now at 57 have explored many ways to fit in, feel normal; with permanent make up and beautiful wigs like yours!!
You are beautiful and do not allow anyone or any situation to dictate otherwise!!!
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Comment by Amy-Rose on May 22, 2013 at 4:40pm
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I am overwhelmed from the amazing comments you have all posted, you are all so wonderful! To those that are asking what I'm wearing, it's simply a synthetic Ellen Willie wig with a mono filament cap— "Code Mono". Nothing special :) I am wearing it while waiting for my Freedom to come.
And to all of you that want the courage to do the same as I have—don't be afraid! You have nothing to be ashamed of or to fear. You will find that your friends will love you that extra bit more, because you are sharing with them who you really are. You'll find nothing but support, and you will become more comfortable around them as you don't have to stress out over whether your hair looks completely natural or not. And by the off chance that anyone thinks differently of you, then you will know that they aren't worth the time of day!
Telling everyone about it changed my life, I've been so much happier since. I hope all of you can be too! x
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You r pretty and young when older its different if wear hair short have to stick to it or people start asking ?s like how your hair grow so fast or etc. ?s always ?s But when young u can be more excepted i think. older not so much. Wish i could be as free as you Amy Rose and you are very pretty and im happy for you
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Wendy that is another problem wigs cost lot of money and if cheap they look awful and dont fit u properly and im never going to be able to afford a freedom hair. I barely can support my child and i on the income i make. So for me beautiful wigs permanent make up only for people with money and i dont have that so thats y i feel ugly and feel like bing looked down upon by (normal) people
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Thanks for putting it into words so beautifully. I too have little hair left on my scalp, no eyebrows and now my right eyelashes are going. I am grateful for wigs but best of all is when we realize we are going to be all right either way!
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