• 10 months ago
Join us as we follow the lives of four women who are affected by alopecia.

Category

People
Transcript
00:00 It makes me feel good that I get to educate people about this condition
00:05 because usually they just think like, "Oh, she shaved her head really bad."
00:09 [MUSIC]
00:20 Hi, my name is Sierra and I have alopecia.
00:24 [MUSIC]
00:27 Alopecia is an autoimmune disorder that causes your body's immune system
00:31 to somehow, for whatever reason, think that your hair is a foreign body or a virus.
00:36 And so it'll keep attacking and attacking and attacking until the hair dies and it falls out.
00:43 So I feel with alopecia, sometimes you can feel a little bit of a tingling sensation
00:48 or just a slight burn or a dull numbing almost.
00:53 There is no treatment, nor is there any cure for alopecia.
00:59 All of this is from the top of my head and the back of my hair.
01:06 So there's just a lot of them that was in old clumps and it just feels...
01:11 God, you can still see all the little hair roots.
01:14 I remember very clearly the first day it happened.
01:17 It was at the very end of my eighth grade year and I was in gym class.
01:21 I was hanging out with two of my female friends and we just finished up running.
01:25 And most of the time I end up sweating a lot on my head and with sweat I get a little itchy.
01:31 I remember reaching behind my head and I scratched one spot that was quite irritated at the time.
01:38 And then I noticed I felt almost something release from my scalp.
01:42 And I withdrew my hand and I looked down and I saw at least eight hairs within my hand.
01:48 I just brushed it off at that time.
01:51 However, I didn't realize that it was going to get much, much worse from there.
01:56 Every time I washed my head, whenever I scratched it, whenever I just brushed it with my hand,
02:05 more and more would come out.
02:07 I would hear people talking about me.
02:10 I would hear people whispering about me, saying like, "Oh my God, look at her. What is wrong with her?"
02:16 I wanted to feel good about myself when I looked in the mirror, but I couldn't.
02:23 No matter how hard I tried, because all I saw was this ugly bald girl.
02:27 And so I wanted to be able to go on a place, even if it was online, where I just felt normal for once.
02:35 Instead of people just seeing me as the bald girl.
02:42 Good boy! Yay!
02:46 Oh, he's a good boy.
02:48 Do you remember what I said?
02:50 Hi, nice to meet you.
02:52 Oh, is that what I said?
02:53 Pretty basic.
02:54 Very basic?
02:55 Really basic.
02:56 Okay.
02:57 And the conversation kind of went to the long lines of, "What brought you to my little corner of the web?"
03:00 And then you said, "I thought you were pretty."
03:02 Yeah, something like that.
03:04 I remember the feeling I had when I first Skyped him as well.
03:09 I was very scared because I didn't really inform him about what I looked like.
03:16 A part of me didn't want to start Skyping him just because I was so afraid, like,
03:20 "Oh, the moment the camera comes on, that's it. He is out the door."
03:24 You literally said nothing.
03:26 And I kind of was looking at you for a little bit, like, waiting for you to say something to me.
03:31 But you never did.
03:33 And that was the first time ever.
03:37 Ever since my condition started that someone didn't even question it.
03:42 This was one of our first dates, I think.
03:50 I don't remember when that was, honestly.
03:52 Yeah, it was at some point. I was visiting you.
03:55 You treat me like a normal, normal teenage girl.
04:04 She thanks me all the time for treating her like a normal human being.
04:08 And this is a photo that we took together. I was having a lot of fun there.
04:16 That was a fun day at the park.
04:19 When I first saw her in the video chat, I thought she was really cute.
04:32 So, does the alopecia bother me? No, it's never bothered me.
04:36 And I like your hairlines.
04:39 Love the patterns in it.
04:41 I kind of grew up a grungy kid, so if I could get her into some jeans without her getting all sour and a leather jacket,
04:48 like, we could totally go do the punk rock thing. That would be awesome.
04:52 [Music]
04:56 Hey, thanks.
05:01 People treat me normally here, and I'm very grateful for that.
05:07 And I love the clean air. I love how everyone is so accepting of one another.
05:16 After I met my now-fiancé, I was becoming much more confident within myself.
05:22 I felt beautiful. And I think people gravitated towards that,
05:26 because for the first time, I genuinely felt good about myself.
05:32 I'm just lucky to be alive in a society where people are mostly accepting and don't bat an eye.
05:46 You are a spectacle, to be sure, but not for the reasons you think you are.
05:52 You help me feel like my true self, and who I want to be and who I strive to be.
06:02 And I thank you so much for that.
06:13 I have alopecia universalis, which means I have no hair on my body.
06:19 Alopecia affected me every single day. I had to put on a mask and hair to face the world.
06:27 I started embracing my baldness during the pandemic, because I no longer had to go into the office every day.
06:33 Today, I am going with my mum to my local coffee shop.
06:38 Going out completely uncovered is making me feel a bit nervous. I feel like it's a real statement, but it's a statement I'm ready to make.
06:44 Right, OK, I'm ready.
06:46 How I wake up in the morning, people will assume I'm not well.
06:55 And that's really difficult, because I'm happy, I'm healthy, I just happen to be bald.
06:59 I have alopecia universalis, which means I have no hair on my body, and it's been that way since I was 12 years old.
07:07 I was at the hairdressers, and she spotted it as she was parting my hair.
07:11 And she beckoned my mum over, because I was 12, so I was at the hairdressers with my mum.
07:16 And I just remember looking at them in the mirror and seeing the concern in my mum's face,
07:22 and the hairdresser pretending everything was OK.
07:25 That was the first moment that alopecia came into my life, effectively.
07:29 And from there, that little bald patch at the back of my head developed quite quickly over the coming months,
07:35 until I basically didn't have any hair over the back of my head.
07:39 I actually said to my mum, "I can't do this anymore, I can't hide, I need to get a wig now."
07:45 And then as soon as this idea of a wig was introduced, it felt like that was the only option.
07:50 And I'm like, "OK, great, we're shaving your head, we're putting a wig on your head, that's it now, Laura, you're the girl with the wig."
07:56 I will always remember one of my best female friends telling me that the boy that I had the biggest crush on
08:04 referred to me as Laura, the one with the wig, because there were two Lauras in our year group.
08:10 Alopecia affected me every single day in my pre-pandemic life,
08:17 in the sense that I had to put on a mask and hair to face the world every single day.
08:25 For me, from the point of waking up, showering, moisturising, letting that soak in,
08:33 before I can do brow tattoos or lashes, I'd say I need to always leave at least an hour to present myself to the world.
08:43 And it's extra difficult. Alopecia is an autoimmune condition.
08:47 I have alopecia, eczema and asthma. I've got the full tripod of autoimmune conditions.
08:53 So it's extra hard because sometimes my scalp is really sore,
08:58 so I'm putting makeup and wigs on top of really sore skin just to make everyone else feel comfortable.
09:05 But actually I'm in agony, which is just ridiculous.
09:08 I started embracing my baldness during the pandemic because I no longer had to go into the office every day.
09:15 And I realised how liberating it was not to have to go through that in the morning, every morning, before I could just exist.
09:22 I first started using social media during the pandemic as well.
09:25 I started following these accounts with beautiful bald women and seeing how they were embracing their baldness.
09:30 And I just remember thinking, I could never do that. I could never be that person.
09:35 And it was only through following and building friendships with these people from all over the world that I've got alopecia.
09:42 And realising that I wasn't alone in this condition and it was normal to them and my experience was normal.
09:48 It really changed everything for me.
09:50 Hello. Hello, hello, hello. How are you doing?
09:52 I'm alright. Do you want a cuppa? Thank you.
09:55 Today I am going with my mum to my local coffee shop where I've been a few times.
10:01 I've worn my bandana there once, but I tend to wear wigs because it's a very busy place.
10:06 And there's lots of local people that I feel like might see me around town.
10:10 But I want to go bald today.
10:12 I feel excited and terrified because it's a very small town.
10:18 People know me. People might recognise me.
10:21 I'm so ready to take this next step in my confidence journey.
10:25 That's my cutest stage. Yes.
10:27 Mum's been amazing in terms of my hair loss journey, both practically and emotionally.
10:32 Practically because you've been the person that's had to buy my wigs.
10:35 You had to fund my alopecia.
10:37 And emotionally it was difficult because I don't think you knew what to do.
10:42 I don't think we felt in control of the situation.
10:45 It was horrible. It was... I wouldn't wish this.
10:49 I would rather have had alopecia myself.
10:52 I'm just proud of Laura for accepting who she is and for knowing that your hair doesn't define you.
11:02 You've done it yourself. You have turned it round and you have realised that you're worth so much more.
11:08 I am so proud, Laura. I am so proud.
11:12 OK, I'm really beginning to feel hungry.
11:15 OK, goodbye. We can go.
11:17 Yeah.
11:19 Going out today completely uncovered is making me feel a bit nervous.
11:23 I feel like it's a real statement, but it's a statement I'm ready to make.
11:27 Right, OK, I'm ready.
11:29 Good.
11:31 After you.
11:33 So I actually feel really good now I'm here.
11:38 I wasn't sure how I was going to feel because I've come here before in my bandana, I've come in my wig.
11:44 I really love it here.
11:46 And I have noticed a couple of people looking.
11:48 My younger self never ever wanted to or thought they wanted to be outside embracing their alopecia.
11:55 But I was clearly lying to myself because I feel so much happier.
11:59 Today is probably one of my proudest moments in my local town.
12:05 Being able to comfortably go and enjoy a meal with friends and my mum and not overthink it.
12:14 I felt comfortable being bald today.
12:16 So that is probably my best moment.
12:18 I used to think alopecia was a reason for me to hide away.
12:26 It made me feel like my hair was everything that I had to offer.
12:30 I lost all sense of my femininity and I struggled with depression and the feeling of utter loneliness.
12:36 Now I think alopecia is empowering.
12:39 It's something that's shown me that I'm stronger than ever.
12:44 [Music]
12:48 I started wearing wigs in my junior year of high school because I couldn't hide anymore all the bald spots that were on top of my head.
13:01 I have this really pretty purple one.
13:03 This is what I would probably wear if I was going out and I wanted to wear hair.
13:09 This one's a little bit sassier.
13:11 My name is Kayla Harder, I'm 20 years old and I'm living with alopecia.
13:15 Alopecia is an immune disease in which your white blood cells attack your hair because they see it as completely foreign like a virus or a bacteria.
13:25 I have alopecia totalis, which is no hair on my head but I have hair in other parts of my body.
13:31 My hair used to be one of my absolute favorite things about me.
13:36 Really, really long, thick hair.
13:39 When I was in eighth grade, I decided to get a haircut.
13:42 So I went to this hair salon and she started pinning up parts and sections of my hair and she kind of had this weird look on her face.
13:49 And I asked her what was wrong and she said, "Do you know you have bald spots?"
13:55 So then I ended up going to the doctor and the dermatologist and they diagnosed me with alopecia.
14:02 I didn't even know what to do.
14:04 You know, as a girl, your hair represents your femininity and to just kind of have that taken away from you is really unfair.
14:13 And it was one of my favorite things about myself that's just being stolen from me.
14:18 I wasn't as happy-go-lucky, I wasn't as positive.
14:21 In my mind, everything was going to grow back, I could hide it and stuff like that.
14:27 But when I started losing more and more and more of it, it got harder to cope with.
14:32 Wondering if my wig's on right, if it looks real, or if it's going to fall off or if someone's going to touch it.
14:38 I used to think alopecia was a reason for me to hide away.
14:43 I stopped caring what people thought of me when I turned it into my trademark look.
14:48 I was tired of seeing all these patches in the mirror and I just shaved my whole head and then immediately after, just posted it on Instagram.
14:57 It was this weight that had been lifted off my shoulder and I could finally just go out and do whatever I wanted to do and not have to worry about hiding anymore.
15:08 When I kind of came out about my alopecia more, wigs weren't really a scary hiding thing for me anymore.
15:15 I can show so much of my personality through wigs.
15:18 Short ones and long ones and colored ones and bright ones and I get to pick who I want to be every single time I wake up.
15:27 A lot of people started messaging me who have alopecia or who have all these other kinds of problems,
15:33 just basically saying how proud they were of me and what I was doing for the alopecian community.
15:39 I get to show the world all the beautiful things that I can make with a bald head.
15:44 And I get to meet all these kinds of people who I never would have reached out to if I didn't have social media.
15:51 Hey guys, welcome to my channel. My name is Kayla Harder and I'm going to tell you a little bit about my life without alopecia.
15:57 I thought my dating life would definitely be limited.
16:01 I didn't really put myself out there a lot and I was really scared to kind of get into any kind of intimate relationships.
16:07 It was really hard for me to love myself, but now it feels like people almost love me more because of my shaved head.
16:15 I just kind of radiate a different sense of confidence with a bald head that I couldn't do with a full head of hair.
16:22 There's so many things to Kayla that make me proud to be here with her and proud to be her boyfriend.
16:27 Hair for women is such a personal thing.
16:30 So when she goes out bald in public, she'd be on my arm and I would love it.
16:34 I'd be smiling, I'd be radiant. I love her to death.
16:37 The first time I came out to anybody who wasn't a part of my close friend group was to an English teacher that I was really close with.
16:49 She had offered to help me with my personal statements that I was sending to college.
16:55 That's how she really found out that I had alopecia.
16:59 Do you remember writing this?
17:01 Oh my God, it seemed like a while ago. Let me see.
17:05 Being a 16-17 year old girl with once gorgeous thick and long hair to just patches of hair was indescribably devastating.
17:14 I felt like I lost all sense of my femininity and I struggled with depression and the feeling of utter loneliness.
17:20 But with the help of my friends and family, I overcome the emotional obstacles.
17:24 I always thought you were so beautiful and so smart.
17:27 When you're reading this to me, it makes my heart hurt for you.
17:30 But I'm so glad who you are now.
17:33 I'm so happy that you've gotten so past it and that you've taken what could be difficult and embraced it.
17:40 I got there, but it took a long time to get from where I was in high school, when you knew me, to where I am now where I'm like, "Yeah, I'm balling in the sexy."
17:52 I want people to learn that alopecia is not debilitating and it's not a disease that can take over your entire life.
18:00 The worst thing you can say to someone with alopecia, "Are you sick? Do you have cancer?"
18:05 It's literally just something that can take your hair away and that's it.
18:09 Now I'm just owning it, living in my own skin and embracing who I am.
18:15 My message to people who look different is to embrace every single ounce of it and to just really let it shine through you.
18:23 Because life is way too short to be hiding, so you might as well love yourself.
18:28 I think alopecia is something that is empowering for me.
18:34 It just showed me a strength in myself that I never knew I had before.
18:40 Having alopecia has really made me root for the underdog.
18:46 Everyone matters. We all should have a voice. We all are beautiful in our own way.
18:53 I'm in it.
18:55 Do you want to look at these pictures?
19:21 This is actually when your hair first started falling out.
19:24 You would put that barrette in.
19:26 Really?
19:27 You don't know that?
19:28 No, I didn't know.
19:29 That's when I noticed it was thinning and thinning.
19:30 To hide the part, like to pull it across?
19:32 No, I didn't know what was going on. It was just sitting. I thought I was putting the barrette in too tight.
19:35 It was getting thinner. See?
19:38 You see the little spots there?
19:40 Yeah.
19:41 It wasn't until your fingernails came.
19:43 And look, that's when it's really falling out.
19:47 I was diagnosed with alopecia areata when I was two years old.
19:51 And at that point, I had just had patches in my hair.
19:54 So it wasn't my whole body, but it slowly progressed to when I lost all my hair.
20:01 And that includes my head, my eyebrows, my eyelashes, like my whole body.
20:05 When Kylie was first diagnosed with alopecia, it was just from her hair was kind of thinning out a little bit.
20:11 And then I noticed a weird combination of her nails fell off and there were other nails underneath.
20:17 And that's when I took her to the dermatologist.
20:20 And by that time, she had lost at least 50% of her hair.
20:23 And they kind of looked at me and said, "It's alopecia. There's nothing we can do. Have a nice day."
20:27 And as a parent, you're like, "What do you mean there's nothing you can do?"
20:30 Alopecia is when your autoimmune system attacks your hair follicles and then makes your hair fall off.
20:38 This is my fifth grade picture because my hair was really thinning and then it was just becoming my part.
20:45 And then I had that, like, ponytail, like only a ponytail.
20:49 A ponytail? Where's that?
20:50 Right there.
20:53 There it is.
20:54 Yeah, that's the worst.
20:55 You've been wanting to do that a long time.
20:57 And then that's when I shaved my head.
20:59 I knew that I was going to look a lot different than everybody else
21:03 and that I would have to find ways to come to terms with it because there was no hiding it anymore.
21:09 It was just going to have to be a part of, you know, who I was.
21:12 Sometimes I wish that I had hair, but I would never change it for a second.
21:17 I think the whole journey has made me exactly who I am and made me confident.
21:21 I don't think that I would have had this confidence if it wasn't for alopecia.
21:31 I work as a florist.
21:34 I answer the phone.
21:35 I do smaller scale arrangements like prom bouquets, you know, mixed bunches, things that when customers walk in.
21:42 So about once or twice a day at work, somebody comes in and addresses my alopecia
21:55 and asks me why I'm bald or if I'm going through treatment.
22:00 So I'm pretty used to it at this point.
22:03 Living with alopecia isn't necessarily hard, but it is a little bit exhausting.
22:12 Everybody has a comment or a question or, you know, wants to know why you don't have hair,
22:20 which is fine and I love to educate people and, you know, that's what I pride myself in doing.
22:27 I never wore a wig just because I wasn't attached to my hair.
22:32 I felt more insecure in a wig than not.
22:35 So I work closely with the National Alopecia Areata Foundation as a youth mentor.
22:46 Once a month I meet with the kids that I mentor.
22:51 I always try and take my experience, use that to help them, you know, go through their experience.
22:57 I have definitely experienced bullying.
23:00 Not necessarily the, you know, normal kind of bullying where someone just picks on you every day or something like that.
23:08 But even in the store, a little kid might be like, "Mom, is that a boy or a girl?"
23:13 Or if I'm in the woman's bathroom and someone like walks in at first and doesn't see me, like my face,
23:19 will like jump back and look at the door and think, you know, they're in the wrong bathroom.
23:24 So my hair, I want to say about last year or the year before, started growing.
23:31 And it would always grow in the summer a little bit, just a tiny bit.
23:35 And then now it's been growing since last year all the time.
23:40 I let it grow a little bit last year and I hated it.
23:44 It just looked a little crazy.
23:46 I try to shave it as much as I can, but I also at this point, now I don't like to be completely bald, like baked back.
23:53 But I like it like just a little bit of hair, which is kind of what I have now.
23:57 I kind of embraced it and like I have, I guess, for the rest of my life.
24:14 I don't think Kylie has too many challenges with living with alopecia.
24:18 How are you?
24:19 Good, how are you?
24:20 Good.
24:21 I know sometimes it can be hard for her when, like in a new place, if a lot of people are looking at her,
24:28 I know sometimes that can be a challenge.
24:31 But she always handles it really well and she's really open about it and she doesn't ever let it bother her.
24:38 You're like the only person that's ever done my eyelashes or eyebrows well, that I would actually do it again.
24:46 Whenever we go out, Kylie likes when I do her makeup.
24:49 So she normally doesn't do all the eyelashes and everything, but like sometimes for a fun event, she'll do them.
24:56 But honestly, I always tell her this all the time too, she really doesn't even need makeup.
25:01 And I'm always so jealous because she's one of those people who just looks so good without it.
25:05 [Music]
25:10 Okay, you feel good?
25:11 I think so.
25:12 Okay, that's good, yeah.
25:14 Okay, I'll let them dry.
25:16 [Music]
25:26 Kylie is definitely one of the strongest people I know and she inspires me every day.
25:31 And her self-esteem is just amazing.
25:34 She's constantly building up everybody around her and just kind of building their self-esteem too as well, which is just amazing.
25:42 And I really look up to her and admire her for that.
25:46 We always said Kylie smiley, she's like a ray of sunshine, always had a positive attitude.
25:51 She was always a social butterfly, even as a baby.
25:54 And alopecia didn't change it at all.
25:57 I think I've definitely pushed beauty standards and, you know, it's definitely hard being a little bit different.
26:04 But I'm confident in myself and confident in, you know, what I'm doing.
26:09 Sometimes I wish I had like long blonde hair, sure.
26:13 But I would never trade alopecia for anything.
26:17 It's one of my favorite things about me.
26:18 It's made me who I am and it's opened the door to so many things.
26:22 It's actually, to me, it's a strength, not a weakness.
26:26 [Music]
26:40 [Music]

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