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.
I love this blog! I don’t have alopecia but when I was 14 I developed trichotillomania and destroyed the hair follicles in my eyebrows and they wouldn’t grow back. Kids at school used to call me a freak or ask if I had cancer and even I didn’t know what was wrong with me (or why I couldn’t stop pulling out my eyebrows). My mom got me covergirl eyebrow pencil and I had to learn how to draw them on myself. When I first started they weren’t very good but then I got the hang of it eventually. I’ll never forget, when I was a freshman in high school a senior boy came up to me and told me it looked like two caterpillars had died on my face. After that I tried every single hair re-growth serum I could find, but they wouldn’t grow back. I almost went and got them tattooed on because I couldn’t handle the teasing anymore. They grew back about six months ago (it’s been five years) and I really miss the way I used to draw them on. I can totally relate to your posts about smudging! Ugh that used to drive me crazy! Good luck with everything and keep the blog going! Everyone deserves to know how beautiful they are, no matter what they look like!
Thank you so much for your submission and best of luck! xx
“When people ask to touch your head without your wig on.”
Submitted by dontreadoutloud. Thank you for the submission, it’s so annoying when people do that!!!
“Getting hotter than everyone else because it’s like you’re constantly wearing a hat.”
Submitted by dontreadoutloud. Thank you for the submission!
Remember you can submit your alopecian thoughts at all times through the submission box or the ask if you prefer to stay anonymous and that you can submit your story if you like!
“Having to get your eyebrows tattooed on because it eventually is just easier than drawing them on everyday, even if it is painful.”
Submitted by dontreadoutloud. Thank you so much for the submission. Having tattooed eyebrows myself I can’t but agree!
When I first noticed my alopecia, it wasn’t entirely noticeable because the spots were sort of under my hair. What hurt the most was being the only person who knew about it. It was my own personal struggle. Looking in the mirror I felt less of girl, less pretty because I didn’t have all of my hair. I look at girl’s hair line’s all the time… and I’m jealous! I used to have to get a haircut every month in order to help hide my spots.
I know how disrupting losing your hair can be and how hard it is to feel like yourself when you don’t look like you think you should: No girl of our age should ever face something like that considering the amount of pressure society already puts on our appearance.
I think what you’re going through will make you stronger and embracing your condition will have you more confident than ever. You’re not less pretty or less of a girl just because your hair is falling. You are not your hair. You are a beautiful, strong young woman and the world is there for you to conquer, please don’t let your alopecia hold you back.
Also, if you ever feel like you need to talk to someone, please don’t esitate to contact me, I’ll be more than happy to give you my Skype and have a chat.
A hug,
A.
nanogen fibers
Hey. I had alopecia areata- for a few years now. Most of my spots are coverable and unnoticeable. There is one spot that is on the top of my head and I found something that really works! If anyone googles “nanogen,” it should come up. it’s a powder that fills in and sprays. For the most part it stays in all day. This will only work for those with alopecia areata, obviously not someone with their whole head!
“Bald girl problems: not being able to go anywhere without people questioning my appearance. I don’t get whats to unusual about it. I’m bald - get over it. Stop staring you ignorant fucks. I love being bald. I wouldn’t have it any other way. (I’ve had alopecia since I was two)”
YOU ARE AWESOME. Congratulations on your life <3 XOXO, B.G.P :)
I don’t *love* being bald, since I am still adjusting to my fairly new condition but I agree: I wouldn’t have it in any other way. Sometimes I look at my reflection and think “I’d love to have my hair back” but other times (more often than not lately, to be honest) I think “That’s how I look like, that’s how I was supposed to look like in the first place, actually” and I’m happy with myself.
