Alopecian life

Alopecia Documentary

Hey Everyone!

My name is Megan and I am studying film at a University in New Zealand.

I am nearly finished my final year project which I chose to make a documentary about alopecia. I wanted to show that bald can be beautiful and that just because someone is bald it is not necessarily because they choose or because they have cancer! I hope my documentary can inspire people with alopecia to realise they are beautiful no matter if they decide to wear a wig or be bald. There are so many people out there going through the a similar thing so to get that message across I am trying to get people with alopecia from all over the world to submit a photo of themselves. It can be a photo that makes you look like everyone else or it can be a photo that screams “hey I have alopecia! So what!”

I have seven photos of people so far from Australia, New Zealand, the UK and the USA and I am hoping to get five more so spread the word please!

Any questions feel free to ask me and if you want to submit a photo go to my blog mynameismeganrose

Thanks!

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Today, for the first time since I lost my eyelashes, I went out without wearing any make up.
The first thing I do every morning is to “fake” my lashes with a line of eyeliner, today I was supposed to be alone at home all day so I didn’t. Then I had to pop out to the shops to buy something for dinner and I completely forgot I don’t have eyelashes so I just went out without make up, just as I would have done a year ago.
It feels so silly to write this because it’s like “Yeah, you went out for like 20 minutes to go to the shops without any make up. Everybody does that.” and I always feel so vain when I think of my small confidence achievements as a big deal but today, for the first time in a long long while, I have completely forgotten I don’t have eyelashes and when it came back to me (namely, when I met a friend of mine in the vegetables aisle and I noticed the eyeshadow she was wearing) after three or four seconds of panic I couldn’t care less. And that’s the best feeling in the world.

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Anonymous asked: I love your blog. I am 15 and I've had alopecia since I was 2. While I was too young to care I didn't hide, I was myself. Later on, I started wearing hats. I loved that. Having thousand of hats is amazing. For 2 or 3 years I am wearing wigs, changing them every 6 months and it is fun. I am insanely emotional. I struggled for long, but i've learnt to deal with it. It's not a question, but i just wanted to share and say how amazing this blog is. I just wish this world was more aware of alopecia.

Thank you so much for your kind words and for sharing your story! Alopecians visibilty seems to be increasing, I am confident that in some years it will be recognised.

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yarrximmacookie started following alopecianlife

Hello! :) Welcome!

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My Alopecia Story

“Hi! My name is Isabelle and I have alopecia!”

I was diagnosed with alopecia the spring of third grade, around Easter. I was eight that time and it was maybe… 2007? and well, if you are too lazy to do the math, it’s been about five years since. Well… I can’t seem to remember but my aunt started noticing hair all over the shower drains, my hairbrush, and my pillow. I noticed a bald spot forming and was able to cover up with thick headbands for a while.

Later, I tried up medicine and it didn’t really work. I tried creams, gels, pills… but nothing seemed to work. Later, more spots formed and I had to wear bandannas. They were like, my life at the time. Being the little schoolgirl I was, my whole wardrobe had to match and I bought bandannas in every color of the rainbow. (They still do have to match) Later, about sixth or fifth grade… my alopecia progressed to totalis and the hair to skin ratio was a bit off. I continued my journey, not doing anything about it. You know, wishing I could tell somebody but knowing that it would be better that I kept it to myself. I continued to pretend there wasn’t anything wrong… ignoring that I no longer had hair. But I lived life, not depressed… but not dealing with it either. But then, BAM. The summer of seventh grade.

I met this wonderful girl named Taijha on a Spiderman ride in Universal Studios (Island of Adventure for you nit-picky people.) She inspired me and showed me that I wasn’t alone. She was the first person I’ve EVER met with alopecia. Seeing her made me realize that what she was doing was exactly what I was doing with my life. She wore a wig, didn’t tell ANYONE about her problems and she was constantly bullied. I felt bad, and I saw myself in her. I mean I was lucky enough to be acknowledged, but I don’t think I was exactly ACCEPTED. This was when I realized I was ready to tell the world. (This is a lie) I had a similar conversation with my friend dealing with saving the world, how we both wanted to make a difference.

THIS is where the fun part comes in. It was one of those “now or never moments”. We were riding in the car to Ridgewood with my parents and I kept on thinking. “I want to raise money for the NAAF” But there were so many things running through my head, the pros and cons. I thought: Why am I so selfish? There are cancer patients dying, and I’m worrying about a disease that doesn’t even harm me. But the most important reason: I didn’t want to face it. I didn’t want them to know I had alopecia. I didn’t want them to look at me like I was broken. That was my biggest fear. So on our way to get ice cream, I finally blurted it out. I wanted to raise money for alopecia. Of course, my parents immediately agreed… happy and proud that I wanted to raise money for a cause. But honestly, this idea scared the HELL out of me. I had no idea how I was going to tackle this little dilemma.

So it’s about 9 PM in the summertime and I’m typing away, feeling happy that I confessed. It was a load off of my shoulders. I typed away, emailing two people. Laura Ralph of the NAAF and Maggie. Those were the first two people I trusted. Maggie, was the first one to know simply because she was online first. But I’m glad she was there. So Maggie, if you’re stupid enough to read through this whole story. Thanks. I got a message three days after, and I got 30 bracelets and a few pamphlets. It was the happiest moment of my life. I called up all of my friends and told my little plan: to sell bracelets and ribbons in the little town of Ridgewood. It all didn’t work out, and honestly… we were getting nowhere. By the way, the 30 bracelets from the NAAF… my mother mostly sold them. We made over 100 dollars. I love her for selling them in her hospital. But then, the latest installment of my story… the Teens for Alopecia.

The three words that changed my life. We ended up illegally selling bracelets in the mall (oops) But nonetheless, we just solicited the mall asking for donations and selling two dollar bracelets we bought off of 24hourwristbands that said “I support the Teens for Alopecia” We raised over 400 dollars, just through that. It was a rough start, but overall it’s been fun. I can’t say that I’ve fully accepted my alopecia and I can’t say that I ever will… but I’m learning to deal with it and I mean, as my dad loves to say, “It’s only hair. It won’t kill you.” Through my ongoing story, I’ve learned about acceptance and how supportive my friends and family are. I mean, my friends would illegally sell bracelets with me. Uhm. How amazing are they? So Olivia, Maggie, Bella, and Owen… The original DPC/TFA loves. You are the best and I love you guys so much. You seriously are the reason I am writing this right now.

My alopecia’s a part of me, and I’ve learned to accept that fact that I have it. It’s shown me that I am strong. That life goes on. Everyone has a challenge in life, and this one is mine. But I like to think that my alopecia isn’t a challenge, but just something that makes me… me. My alopecia has helped me and made me who I am now. Honestly, I’m glad that I have it. I love and am happy wearing bandannas. I stand out in a crowd, and if you ever lose me… just say. “I’m looking with a girl. The girl with a bandanna.” and you’ll know that that’s me. I hope that you can agree with me when I say my alopecia story is pretty successful, because I’m pretty proud of it. I have a long way when it comes to all of my goals and hopes, but I’m halfway there. What I hope to do one day? I want to buy a wig, see myself just once with hair as a 13 year old girl. But I want to be able to go out in public, with no bandanna. I want to be able to straight out tell people I have alopecia… that I have no hair, not just shy away like I’m embarrassed… because I’m tired of people assuming its cancer. Its not. But honestly? I hope to be able to be the girl again that can braid her hair. A girl that hopes that she will be able to check off the word “black” in the hair color box. But most of all, I want to be the girl that made a difference and didn’t just excruciatingly “live” with the fact she has alopecia. I want to learn how to accept it. To love it. … and to spread the word.

 ”Hi! My name is Isabelle and I have alopecia, an autoimmune disease that  has taught me and made me what I am at this very moment.”

Admin comment: Wow! You are amazing. When I was your age I would never have had the guts to do what you did. Your story is so inspiring and I wish you all the best. It’s fantastic to read how this disease is making us better and stronger people. Keep up the good work because you’re doing an amazing job! Lots of love.

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It’s story time!

I’ve known this guy for some years now, and we’ve always fancied each other. Since I’ve moved to another city we just see each other two or three times a year now and he’s never seen me without a wig. Or, to be precise, he hadn’t until yesterday.
Last week he asked me out and yesterday we went for a drink and I really couldn’t be bothered to wear my wig especially since it’s so hot right now. I was very nervous he’d be nasty to me especially because he first noticed me because of my red hair.

I was wrong. He was super nice to me and just mentioned it once, asking me how I am doing and telling me he was happy I am comfortable enough around him not to need to wear a wig just to “impress” him on a date. To be honest, I couldn’t quite believe it, it was such a massive confidence boost!

So, my dears, remember that it doesn’t matter whether you have hair or not, or whether you wear a wig. If someone likes you for who you are he/she’ll think you’re beautiful no matter what (and you are, trust me).

Loads of love,
A.

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