Let’s Talk About Alopecia

I want to start a new series. I guess this would be the second post in the series as I previously posted Let’s Talk About Sex, Baby. My aim is to open up a discussion and get people discussing things they never usually would or learn things they didn’t know about before.

I wrote about alopecia once on my blog back in 2011 and even then it was only brief.

I want to start a conversation about what alopecia is and what it means to have alopecia.

Let’s get the technical stuff out of the way first:

What is alopecia?

Alopecia is the general medical term for hair loss. There are many types of hair loss with different symptoms and causes. – NHS

What type of alopecia do you have?

Alopecia areata causes patches of baldness about the size of a large coin. They usually appear on the scalp but can occur anywhere on the body. It can occur at any age, but mostly affects teenagers and young adults. […] Alopecia areata is caused by a problem with the immune system (the body’s natural defence against infection and illness). – NHS

I was diagnosed with alopecia areata when I was 7 years old. Imagine going 7 years of your life looking forward to your mum braiding your hair? Lacing in ribbons on special occasions? Giving you bangs for the first time? Brushing your long hair?

Then boom.

I can’t remember the exact feeling I had when I realised my hair was falling out. I was quite young when it happened and didn’t really understand what was going on, or why I had to be in the hospital so much. I do remember my mum sewing me special hats to wear. I do remember a boy picking on me because I had no hair. I do remember feeling really self-conscious.  

My hair did grow back, but then it fell out again around the age of 9 and ever since then it’s been a downward spiral.

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For all intents and purposes, I was generally a happy kid despite all of this. But not all of the time, you understand.

A Timeline

Back to the good ol’ days of ribbons in my hair.

Bam.

I genuinely look like a boy. 😂

Scientists do not know the exact cause of alopecia, but they do believe that a variety of factors come into play. So if you asked me why my hair falls out, I wouldn’t be able to tell you. 

I have always struggled with my hair (for obvious reasons, you’re probably thinking), but it’s becoming more and more difficult as time goes back. Especially now as my alopecia is the worst it’s ever been in my life. I’ve reverted back to what my hair looked like in the photos above. There are some days where I wake up and look at myself in the mirror and burst into tears, and despite the fact that I wear a wig – have to wear a wig – it doesn’t make it any easier.

Throughout my secondary school years, my hair was great. Amazing. Fabulous. I really wished I’d appreciated it more back then. I really wished I’d taken care of it more back then. I actually had a full head of hair that I didn’t have to hide under silly hats or bandanas. I could actually style my hair the way I pleased and not have to worry about bald patches. I was actually carefree and the only thing that actually bothered me was teenage acne that made my face look like a football field. 

This lasted all the way up until university. I noticed my hair started getting thinner. I bought my first set of clip in extensions and thought, this will do. It got to a point where I had to rely on them every day, and in hindsight, I probably shouldn’t have used them as much as I did. It caused unnecessary strain on my hair because I was clipping and unclipping, pulling at my hair. But I didn’t notice and/or didn’t care because it temporarily fixed the problem. My patches weren’t showing. My hair was even (one side of my hair grew faster than the other, so despite haircuts to even it out, it would eventually just go back to what it was before). 

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Alopecia is not something I used to speak about IRL. My family knows about it, my best friend and my oldest friend know about it, and for the longest time, I believed those were the only people that should know. 

I remember there was this one time in science class and I heard, “Hahaha, Chynna has a bald spot” and I panicked. I quickly tried to cover it up. How do I explain this? I couldn’t move for a split second, my face was burning with embarrassment, I could feel the tears threatening to spill out. Then a hand gripped my shoulder and firmly took me out of the classroom and I broke down and she allowed me to cry like an absolute baby, but she understood. 

It’s hard, you know? How do you easily slip in the fact that you have alopecia and, “Oh, btw? This isn’t my real hair, it’s a wig.” This is and I think always will be an issue when it comes to guys.

My first boyfriend knew I had alopecia but didn’t find out until months into our relationship. I remember being in the kitchen of our uni accommodation and one of my housemates mentioned in passing about my tiny bald spots. (I mean really, girl? Couldn’t you have asked me in confidence?) and my boyfriend at the time being all, “Yeah, I’ve asked her but she won’t tell me.” So, in the end, it turned out to be a forced confession and even though he was very supportive, I didn’t feel comfortable talking about it.

I’ve made it a habit now of getting it out of the way. It’s still difficult, but I just rip it off like a band-aid. At the end of the day, alopecia is a part of who I am. I try not to let it define me, but I can’t deny that it’s there. 

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My last relationship, I reckon, was part of the reason my hair started falling out again. Stress and hair loss are said to be related. The worst part of it all is that he turned around and used my alopecia against me. Imagine being told, “Hopefully the next man won’t be repulsed by your bald patches as much as I was.”? 

Something as personal as alopecia, to open up about something like that to somebody you love is a big deal. Just another way to learn that people are dicks, huh?

I really just want to post this to show people that alopecia is a thing and I know there isn’t much awareness about it. That’s why Alopecia UK is one of the charities I’ve chosen to support this year; I’ve yet to decide how I will raise money for them, but I’ll keep you updated.

In raising money for this charity it will go towards providing support, information, and advice to anyone directly or indirectly affected by alopecia.  

So, to my fellow alopecians… we got this. It may not get any easier (let’s not lie), but if we’ve got the support and the care and the love, then we can do this. We absolutely can.

13 Comments

  1. May 7, 2017 / 7:35 pm

    I am loving this “Let’s talk about ____” series so far! The last one was insightful and stirred my brain for some interesting thoughts.

    We as a society need to do a better job at being mindful about the type of comments we make. Even the simplest things we say can seriously hurt someone whether or not we mean to. This kind of stems to the fact that we need to raise our next generation better. I’ve received negative comments about myself from my elementary days and still remember it.

    Opening up about things is never easy. There were a few things I was scared opening up on. At the end, if that person truly cares for you, they’ll understand. I was also taught that if someone doesn’t want to tell you about something, let it be. People deserve to have their own privacy. I know I wouldn’t like it if someone calls me out for something I don’t really want to talk about so it’s respectful to do the same in return.

    Chynna, you’re beautiful and can rock your look like a boss!

  2. May 7, 2017 / 8:15 pm

    I’m going to take a minute and get emotional because I’m an emotional mess already and this post, just…can I just hug you?

    You are so strong and so courageous and just such a boss that I can’t even handle it. You’re ability to talk about something that affects you personally, openly and in a way that educates people about it is so inspiring right. You don’t even know.

    I’m having such a difficult time expressing myself or finding the strength to explain to people my current situation but you are giving me so much life. You’re inspiring me to open up. I’m sorry, my words are not eloquent but I adore you.

    You are absolutely gorgeous and I am truly happy to know you.

  3. May 8, 2017 / 6:01 am

    Omg Chynna T_T Thanks so much for sharing something so personal to you. I always feel vulnerable sharing something personal about myself so I can relate to how draining just writing/talking about it must be! *Hugs*

    First I want to say that any man that is repulsed by your struggles isn’t someone who deserves someone as awesome as you. I haven’t known you personally for very long but in the time that I’ve gotten to know you through your blog is that you’re a beautiful person inside and out! And I always love reading about your thoughts in particular because they’re always so insightful and thoughtful.

    This is also my first time hearing about alopecia, (although I’ve heard of people who have had it) and I just want to say (and also agree with you) that your struggles and personal experience are just a small part of who you are. You’re not defined by them but they help shape to be the wonderful person you are. You’re awesome!

  4. May 8, 2017 / 12:45 pm

    Wow. I didn’t know your alopecia was this serious. Thank you for writing about this. This is such an educating and heartfelt post. I mean, I lose hair, too, due to PCOS, and I even had a kid point out my “bald spot”, and it made me so uncomfortable, but my hair situation is nothing compared to yours. I could feel your struggles and frustrations in this post. And while I don’t suffer from alopecia, I can relate from my speech impediment, lazy eye, and hearing issues that kids were cruel about back then.

    Because of your wig, I had no idea your alopecia was this severe. I think it’s good to speak out more about it so people are aware and can be understanding. Also, that horrible ex of yours — CAN I SMACK HIM!? I can’t believe the nerve of him saying that to you about your next boyfriend being repulsed by your bald patches? Seriously? Whoever that douche is, I’ll have no qualms kicking him in the crotch! Ooooh, he’s boiling me up!

    Anyway, Chynna, you’re gorgeous with or without hair. Your inner strength is your strongest beauty, I feel. Thank you for sharing this with us. You’re awesome and never forget it! <3

  5. May 8, 2017 / 7:03 pm

    I’m so proud of you for speaking about something so close to your heart. I can’t imagine suffering through alopecia; you are one brave soul. I love how you own it and are not ashamed of it. The last guy you dated was a douchebag, I’m glad you got rid of him. I also love how you get it out of the way right away because it weeds out the assholes.
    I’ve always struggled with hair too because I have trichotillomania. I developed it at a young age (around 6 years old) and also tried to cover it up. I don’t recall being bullied for it but because of my bald spots I’ve always been anxious and insecure. I’ve been trying to fight the urge to pull out my hair but I have lapsed so many times already this year. Now, I will definitely try not to because people with alopecia have it a lot worse than us. We can fight our urge but you have no control over alopecia.
    I’m glad you shared your story and I want you to know you’re not alone. I’ve got your back, sister! 💖
    I wish people would stop judging others by their physical appearance because they never know the full story. It’s stupid to judge someone just because you don’t like how they look. Likewise, we need to realize that we don’t exist to please others.

  6. May 9, 2017 / 8:34 pm

    This post was so sad but also I am proud you talked about something that is close to your heat. I know a celebrity: Patrick Stewart had the same condition and that’s why he’s bald. Hugs. I can’t imagine how it must have felt to have this condition. Thank you for sharing.

  7. May 11, 2017 / 10:48 pm

    I can’t imagine having to deal with that. *hugs* Anyone that doesn’t accept you isn’t worth it!

    I did have a brief problem with losing hair. It wasn’t Alopecia, I believe the doctor had said it was stress. I was losing a lot of clumps of hair. Some special shampoo helped, and it did grow back. But it can be quite scary.

    I know this must be tough, but don’t let it get you down. You’re beautiful inside and out! =3

  8. May 13, 2017 / 1:53 pm

    I love this series, Chynna! The two posts so far are some of the most interesting blog posts I’ve ever read. It’s so great that you’re talking about such important topics. You’re so brave for doing so!

    It must have been hard having alopecia from such a young age. I can’t imagine having to deal with that in primary school!

    I watched the video you shared on Twitter this week (from First Dates) and it was so emotional. It must be a difficult thing to have to tell people when you first meet them, especially in a dating situation when things are already terrifying. At least it weeds out all the idiots, if you tell someone straight away. Who wants a relationship with someone who can’t deal with something you can’t help anyway?!

    Speaking of idiots, I can’t believe your ex said that to you. That’s absolutely disgusting. You’re 100% better off without people like that in your life. Even if things are bad, you never use something like that against someone. Anyone who views alopecia in such a way isn’t worth a second of your time.

    Thanks for sharing this, Chynna! You’re such a strong and amazing person!

  9. May 14, 2017 / 3:23 pm

    I am always looking forward to reading your posts, Chynna! Your Lets Talk posts so far has been really interesting for me to read. Thank you for sharing your story on Alopecia, I hadn’t heard of it before reading this – it was very insightful and educational! I didn’t realise that you had it at all, so this was interesting to read.

    I bet it took a lot to write it and not to mention publish it so props to you for sharing. Other Alopecians would be grateful – I know it! You are incredibly strong. <3 I can't believe that your friend had mentioned it to your boyfriend like that, I'm actually really mad. I would hate it if my friends started sharing stuff I didn't want others (especially boyfriend at the inital stages of our relationship) to know. I'm glad he was understanding though but it's still really awful. I'm glad that you're okay anyway, you're incredibly strong, I admire you so much. <3

    My heart aches at what your ex said, "“Hopefully the next man won’t be repulsed by your bald patches as much as I was.”?" That is fucking disgusting and honestly hurts me so much. I want to give you the biggest biggest hug. Don't let boys get to you. </3 Fucking idiot. I've had my fair share of exes using stuff they know about me against me to feel better about their damn selves. IDIOT.

    Ugh, I can't wait to meet you. You are incredibly strong and beautiful. I feel really emotional writing this post but I am inspired by how strong you are. I love you Chynna <3 <3

  10. May 18, 2017 / 5:43 am

    Thanks for sharing with us, Chynna! I didn’t realize you had alopecia, and I think you’re amazing for writing about your experience with it. I can’t believe how insensitive people are about it, especially your last ex. What a jerk, and good riddance to junk like him. Having this condition and having to share something so personal must be hard. You’re a strong and amazing person! I think it’s great to spread awareness about this!

  11. February 8, 2018 / 1:14 pm

    Oh my goodness, I can’t believe I have found someone who’s openly written about this. Just reading this I felt so sad at how unsupportive some of the people in your life were (that ex, ugh) but also so happy you ended up accepting it AND supporting others along the way.

    I had a period of stress induced alopecia two years ago and I’m living in constant fear of it coming back again, I don’t actually know how not to! Reading your post definitely helped though. I always keep convincing myself I’m the only one that has all these ‘problems’ and it’s always nice to hear how others have conquered through it and become stronger.

    Your post series actually inspired me to talk about my own issues on my blog, so thanks for this. It gave me a much needed push and I feel so much better having hit ‘publish’!

  12. Georgie
    April 19, 2018 / 2:03 pm

    Girl, you have no idea how much I admire you for being open about your alopecia. I remember quite some time ago you still felt self-conscious about it, but I’ve see you tweet about a new wig or colour and you have a radiant smile on your face. 😍 In a world where people care about appearance so much, I understand how self-conscious you were when you were younger.

    I’m mad that your boyfriend found out because it was kind of forced out of you. 😞 And I’m sorry but yes your most recent ex was a DICK. 🖕 I can’t believe he dared say something that cruel. It’s one thing not to like something about a person but what he said was like something a bully would say. 😢

    I really hope that writing your story about alopecia got a load off your shoulders. I know it must have been hard to be open and write about this, as well as sharing the photos and experiences.

    I believe we did chat about this before but I had trichotillomania for a few years, obviously not the same thing as alopecia, but I did get bald spots as a result of it. They got me feeling self-conscious too and the habit of pulling hair out was incredibly hard to stop.

    I really do want to say though, you look baller in the cap and the yellow singlet, if you ever come to terms with rocking without a wig, I think you’d look bomb. 😘

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