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 Alopecia World on May 22, 2013 at 2:36am
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RELATED AW POST: "Acceptance" by Jackie
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Comment by cindy Babs on May 22, 2013 at 12:53pm
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WAY TO GO!! you r an inspiration. Beautiful INSIDE AND OUT.
Thank you. You will b touching many lives with your confidence and wisdom.
Best regards :)
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You are a beautiful young lady with a strong will. I am honored and proud to be a part of the Alopecia World with someone so bright and inspiring as you. Thank you. Your words made my day.
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Comment by Lori on May 22, 2013 at 1:46pm
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Wow. When I read your story it was like reading about my life losing my hair. I think about telling everyone about the real me too but just haven't found the courage. So happy that you were able to do that. You know I really believe I would get the same reactions that you did but just can't do it.===Lori
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You're a true inspiration. You really look beautiful, and I honestly didn't notice that your eyebrows are drawn in.
I am bald and have just a little eyebrows left. So I've been having to draw them in too.
Thanks for letting me know that I'm not alone in this.
Take good care, and keep on going strong!!!
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Comment by KStew on May 22, 2013 at 1:52pm
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Thank You Amy Rose for sharing your powerful story!
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Comment by Mary on May 22, 2013 at 2:05pm
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WAY TO GO!
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Comment by Emily Mondin Johnson on May 22, 2013 at 2:16pm
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<3
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Absolutely beautiful! Good for you! Hugs......
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Comment by Donna on May 22, 2013 at 2:42pm
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Good job, Amy. We are all more then our hair. It takes courage to stand in the light of our truth when it flies in the face of what is "normal". It takes a true sense of who you are to walk into the world as a bald woman. Men are more socially accepted (please know that I don't discount men suffering with Alopecia). In my opinion, bald men are looked upon as bald men. Bald women are looked upon as cancer patients. I would not have chosen to be bald but you know what...it tests my self esteem on a regular basis and offers me the chance to have a well honed backbone. I am 56 and have had Alopecia (in one form or another) since I was 12. 2 years ago everything fell out. It took some adjusting but I now walk into the world with my bald self with love and compassion for me and others in general. I have chosen to not wear wigs or replace my eyebrows...yep, I'm a clean slate! It's what I look like....it's not who I am. Best of luck going forward, Amy. You are beautiful:)
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