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A big hug!
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.
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.
Don’t let anyone tell you you’re not good enough or pretty enough just because you don’t have hair. Don’t EVER let other people decide for what you want, not your friends, not your partners, not even your family. Don’t let them treat you like you’re sick or a freak because you’re not. You’re beautiful, bald is beautiful, no matter what people say because it’s not hair that counts. Fuck it, it’s not your weight or your height that counts either, or your size or your eye colour. Nothing of that matters and your hair for sure is nothing of import.
Don’t let others decide for you if you have to wear a wig or shave, if you have to take pills or take shots because they don’t know the first thing about what you’re going through. It’s you who have to be happy when you look in a mirror, so do what makes you happy.
I went to hell and back with my family because I’ve refused treatment since I was old enough to stand for myself but I am happy. I am 5’3, I weigh 11 stones and I’m bald and I’ve never felt more beautiful than I do now. I have accepted my body as it is and if other people can’t they can go and get bent.
Don’t give up, stand tall and proud because you, my friend, are beautiful and you deserve to be as happy and loved as anyone can possibly be.
I love you all.
A.
I’ve just watched Fringe season 4 finale and I couldn’t help it. I’m so, so sorry.
It is interesting though that in every scifi film the hairless creatures are the “superior species” or something. We’re going to rule the world mates!!! Ok, I’ll stop it. I’m a massive nerd, you had been warned.
After wearing a wig for so long, even if I haven’t worn one in almost a year, sometimes it feels like I’ve forgotten to put it on!
It actually happened once: I was really really tired and when the dinner bell rang I went straight from the library to the canteen (I live in a sorority), and forgot to go back to my room to shed the scarf and wear the wig, and ended up having supper with my scarf on. It took me half an hour to realise. Because, basically, I’m an idiot.
