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.

Views: 997

Comment

You need to be a member of Alopecia World to add comments!

Join Alopecia World

Comment by Bonnie Fimiano on May 22, 2013 at 3:11pm

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!

Comment by AZMom on May 22, 2013 at 3:07pm

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.

Comment by Casey on May 22, 2013 at 2:55pm

AMAZING!

Where did you get that awesome long hair?

Comment by Donna on May 22, 2013 at 2:42pm

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:)

Comment by Kathleen on May 22, 2013 at 2:34pm

Absolutely beautiful! Good for you! Hugs......

Comment by Emily Mondin Johnson on May 22, 2013 at 2:16pm

<3

Comment by Mary on May 22, 2013 at 2:05pm

WAY TO GO!

Comment by KStew on May 22, 2013 at 1:52pm

Thank You Amy Rose for sharing your powerful story!

Comment by Helen on May 22, 2013 at 1:46pm

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!!!

Comment by Lori on May 22, 2013 at 1:46pm

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

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2025   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service