Women share stories of losing their hair

0:00This BBC podcast is supported by ads outside the UK. America is changing. And so is the world. But what's happening in America isn't just a cause of global upheaval. It's also a symptom of disruption that's happening everywhere. I'm Asma Khalid in Washington, D.C. I'm Tristan Redman in London. And this is The Global Story. Every weekday, we'll bring you a story from this intersection, where the world and America meet. Listen on BBC.com or wherever you get your podcasts. We focus on the part of the internet that most people don't know about. It's called the dark web. Undercover in the furthest corners of the dark web, US special agents are on a mission to locate and rescue children from abuse.

0:51Move in now. From the BBC World Service, World of Secrets, the darkest web follows their shocking investigations. Search for World of Secrets wherever you get your BBC podcasts.

1:13Hello, I'm Rahul Tandon. Welcome to the documentary from the BBC World Service. This time in BBC OS Conversations, we're bringing together women to discuss losing their hair. What was that like and how did they deal with it? Something unusual happened recently at the Miss USA Beauty Contest. Miss Nevada, 22-year-old Mary Sickler, walked on stage without any hair. Mary had lost all her hair to a condition known as alopecia, but until that moment had worn a wig in public. As it happens, tens of millions of women around the world suffer from some form of hair loss. Understandably, it can be traumatic to come to terms with, but it's not often talked about.

2:01Later, we'll bring together three women whose hair fell out during cancer treatment. That conversation includes, I have to say, a lovely story about losing a wig on a date. But let me introduce you first to three inspiring young women who all have alopecia. Kyra is in the US state of Alabama, Bowene lives in Johannesburg, South Africa, and 24-year-old Anne is in the Netherlands. They gave their reaction to that moment at the Miss USA contest. For me, it was really important because representation really matters. And it's not only for us as those with alopecia that it's important to see that someone steps into the light and proudly shows who they are and what they look like.

2:44But it's also, I think, really important for other people to see that alopecia exists, that women can be bold, because at the end of the day, The media doesn't often show bald people in a very positive light. Quite often they make it seem like it's a joke. So I think it's really important that it's shown to the world like this and shown that bald is beautiful. I definitely couldn't agree with you more. It was very powerful to see. And it's very encouraging to so many other women out there. I know personally for me, it took me seeing other women be confident with their alopecia and go public and share their stories that helped me be able to gain the confidence to share my story.

3:27So for her to do that on such a huge platform was really such a powerful statement. And it was just so inspiring and encouraging. For me, especially as a black woman, it's even more meaningful to see people who look like me, who have the same hair texture and experience speaking openly about hair loss. And to see her out there embracing who Shifuri is without shame or anything else, it helps break the shame that sometimes comes with it and create a space for real conversations about beauty, confidence or maybe self-acceptance. When did you start losing your hair and how difficult was that for you?

4:07Well, it all started quite simply. As an African woman with coarse, tightly textured hair, I used to wear weaves all the time because they felt easier to manage than my natural hair. So every month I'd go to the salon, take out my weave and have one installed. And over the years, the constant pooling of the same spots took a toll. My hair never really took a break. And that's how I developed it. My own story is that it just came out of the blue. I was just kind of feeling in the back of my scalp and I just felt a bald spot back there. And I was like, oh my goodness, what is that? It slowly progressed over, you know, the next couple of months.

4:46And I went to the dermatologist and they said, this looks like alopecia areata. They offered me, you know, some solutions to try to help with it, like steroid injections. And at the time, I don't think there was a lot of research on oral medications as much as they have now. But I did, you know, some injections over the course of the next couple of months, but I didn't really see any improvement. If anything, my hair just continued to fall out. I stopped doing any type of treatments just because I didn't feel like it was helping. And I'm in the stage with my hair loss and on this alopecia journey where I'm just going to let it be.

5:30I'm going to just live, you know, with it. And I don't want to let it take over my life and be the main focus of my life. It is a big part of my life, but it's not all of who I am. And so I'm just going to, you know, move forward with it and embrace it really and try to empower other women. I was born with a lot of hair and a lot of thick hair. And throughout my childhood, I've been bullied quite a lot. And the only thing that people always complimented was my hair. So it was a really big part of who I was. and when I was 14 and a half, my dad actually discovered a bald spot on the back of my head.

6:07We went to the doctors and he was like, yeah, for most people it will grow back, so you shouldn't worry too much. But then we started to discover more tiny bald spots and they were everywhere. So we were redirected to the dermatologist who then also said, yeah, you have alopecia. And similarly, I also got steroid injections. But after a while, my dermatologist also told me, we don't really think that they're helping. So we don't see the benefit in you needing to go through this without there actually being any hair growth. Six months later, the hair loss was so bad that I just shaved it off because at one point I was like, I'm over this.

6:43I don't want to deal with it anymore because when you are brushing your hair, it will fall out. It will tangle a lot. So it was really frustrating. But for me, alopecia actually brought me quite a lot because, as I said, I was bullied. And I didn't have the best self-worth at the time because I tried to compare myself to other people. I felt like I had to fit in and change who I was. But it made me realize because I was losing my hair that fitting in wasn't the most important thing. What is the most important thing is that you are yourself. You are proud of who you are as a person and you just do what you like to do.

7:14So in that aspect, alopecia actually brought me a lot. Of course, it was really painful and difficult that I was losing my hair. but it also helped me get myself back and get me who I am as a person back. So for that, I am actually really grateful that I got alopecia. We grow up with the idea that our hair is a crown. I think it represents beauty, you know, it represents strength and our pride. So losing it to something like alopecia felt like something was being taken away from me that I didn't choose to give up. I'd say over time I've learned that while hair can shape how we look, maybe it doesn't define who we are.

7:49But the journey has been emotional But it's also teaching me New kind of confidence, I'd say One that comes from within Not just from what's on my head I think I'm learning I'm learning how to be my kind of beautiful I would be lying to y 'all If I said I didn't also want to do braids I'd be lying to y 'all If I said I didn't also want to, you know Like, you know, these days I wear wigs all the time And I've always worn them all the time But deep down, I'd love to feel confident in my own natural hair again. You know, I'd like to do braids. I'd like to show my hair and feel beautiful with what's truly mine.

8:24But I'm only dealing the hair that I've been dealt and the wigs work best. I know some women with alopecia, they, you know, are not confident. And so they want to wear wigs all the time. And it's not even something they want to share publicly. But, you know, we've said that. We've shared, you know, our experiences. But despite that, do you all feel more comfortable going out being natural now or do you still like to mix things up with hats and with wigs and things of that nature? To be honest, Kyra, covering my hair for me has been a mix of emotions, honestly. At first, I felt like I was hiding, like I had to wear a wig just to look normal or feel accepted when I went out.

9:08It was painful because deep down, I wish I could, you know, just be myself without worrying about how people would react. But over time, I've learned to see wigs as part of my healing journey, not something to be ashamed of. They give me the confidence to maybe step out into the world, even while I'm still just figuring out how to love myself fully, with or without hair. I know in my heart of hearts that I would never, ever be confident to step out of my house with the conditions that my hair is. And so for now, they just help me manage, you know, going out and appearing to seem like, you know what, there isn't a condition there, but I don't think I'd be able to ever face the world without a wig on or a scarf on my head.

9:50And I don't think there's anything wrong with that too. I think, you know, when we're dealing with alopecia, I don't think there is a right way or a wrong way to go about this. Wigs are a great form of expression. They're a form of covering and they can help us feel more confident when we go out. And I think whether women want to go out and be natural and show their, you know, bald head, or if they do prefer to wear wigs. I mean, that is completely each person's individual choice and their own individual journey. I don't think there really is a right way or a wrong way to go about it. Yeah, I definitely agree with this, because when I first lost my hair, and I started to wear wigs, people tried to ask me, when are you going to go outside without your hair?

10:36They didn't, first of all, know that I already did, but they kind of acted like it would be the end station of my journey, that when I would go out without a wig, that that would mean that I accepted it. But I disagree because what I always tell other people that I talk to about alopecia, also in the Alopecia Association here in the Netherlands, is that as long as you are comfortable with yourself, when you look in the mirror, when you're at home, everything is fine. Everything, what other people see, it's none of their business. They don't have to know. You shouldn't feel obligated to tell people or to go out without hair.

11:08All that matters is that you're comfortable with yourself when you're by yourself. And yeah, whatever other people see, it's not really anything that they need to know specifically. The reason we're discussing this story is because of Mary Sickler, the Miss USA contestant who proudly embraced her alopecia. But that shouldn't be a story, should it? Men go bald all the time. We don't bat an eyelid. We don't even discuss it. So this is also about the expectations society sometimes puts on women about how they look. And that's going to take a longer time to change, isn't it? I agree. I noticed it as well because I was, of course, at school and you hear people talking.

11:50And, for example, you also hear guys talking. And when they're talking about women, it's always what do they look like? Do they have long, beautiful hair? And it's never about who is somebody as a person. And for example, what I've also noticed is that when I go to a party or when I went on dates before, I never feel pressured to wear a wig because I go out bald and with a wig. But in those situations, I still kind of feel pressured to do so. So also when I was applying for a job, I go out bald the entire day, but I will be putting on my wig because I am afraid that I don't look representable enough as a woman during such an important conversation, which actually makes no sense because it shouldn't matter.

12:31Also, for example, when I was watching a movie, I don't remember what the movie was called. I think it was Holy Dates came out in 2020. And there is a scene where this woman says, yeah, because bald women don't really get a lot of dates. And with the media and movies and TV shows, we really are putting the stereotype and certain view on women. And people unconsciously also use what they see to form their own opinion. So I think it's really important that there's more representation about this so that it is also more normal. Because it is normal, but it doesn't seem as normal now for people. And that's something we have to work on.

13:08Anne in the Netherlands, Bowenie in South Africa and Kyra in the US. I'm Rahul Tandon and you're listening to the documentary from the BBC World Service. In a moment, we'll meet three women dealing with hair loss after cancer treatment.

13:31America is changing and so is the world. But what's happening in America isn't just a cause of global upheaval. It's also a symptom of disruption that's happening everywhere. I'm Asma Khalid in Washington, D.C. I'm Tristan Redman in London, and this is The Global Story. Every weekday, we'll bring you a story from this intersection, where the world and America meet. Listen on BBC.com or wherever you get your podcasts.

14:01We focus on the part of the internet that most people don't know about. It's called the dark web. Undercover in the furthest corners of the dark web. US special agents are on a mission to locate and rescue children from abuse. Move in now. Police! From the BBC World Service, World of Secrets, the darkest web follows their shocking investigations. Search for World of Secrets wherever you get your BBC podcasts. We focus on the part of the internet that most people don't know about. It's called the dark web. undercover in the furthest corners of the dark web. US special agents are on a mission to locate and rescue children from abuse.

14:47Move in now. From the BBC World Service, World of Secrets, the darkest web follows their shocking investigations. Listen on bbc.com or wherever you get your BBC podcasts.

15:04If having cancer isn't bad enough, Treatment can also cause some people to lose their hair. Chemo and radiotherapy, which target fast-growing cancer cells, can lead to hair thinning or hair loss. It's often temporary, but sometimes it can be permanent. We brought together Lauren in the UK. She had Hodgkin lymphoma, a type of cancer that affects the body's immune system. Catherine, originally from the US, is now in Scotland. she's had breast cancer and Lizzie in Nigeria also had breast cancer. When I was first diagnosed I remember the first question I asked my doctor was how long am I going to leave like when am I going to die and then the next question when he told me that I would be starting chemotherapy is I'm going to lose my hair and for me I'm a hairstylist I make hair and I love doing creative you know with my hair and he said I'm going to lose my hair first I was like, am I still going to look beautiful?

16:02I felt like a part of me is going to fade away, that I'm not going to look beautiful like I was again. So those were my concerns. Yeah, I definitely felt the same. My first thing was, am I going to die? And then after my hair was my defining feature, my hair was down to my bum. It was long and wavy and people knew me for my hair. And I said, Oh, my gosh, I'm gonna lose it all, aren't I? And my oncologist was like, well, I would recommend you cut it to your shoulders. I cold capped, I still lost over 50 % of my hair. So I'd like to say I looked like Gollum. And I was like, I'm losing who I am. Like, that's what I'm known for.

16:44And yeah, that was really upsetting. Yeah, I completely relate to what both of you have said. Actually, it's Lauren here. I guess my first question was, can I keep my hair or not? And that was the biggest fear. I didn't even care about the chemo, the plan. My main thing was just, am I going to lose my hair? And I'd looked at the option of a cold cap. So I said to them, you know, I know this is there. Can I keep it? And they just looked at me straight away and said, there's no point of view trying it because of the chemo plan that I was on. It was so intense. It would just fall out. Can I just interrupt you there, Lauren?

17:13When you said cold cap, just tell people more about that. I'm sure one of the other ladies who have done it might be able to answer better. But I do believe it's an option to basically keep the hair for longer. And I think it freezes the follicles to prevent it from being lost at a really fast rate, which might happen if you didn't have it. Yeah, that's what cold cat is. Think of just ice on your head for seven or eight hours. It freezes your hair follicles. You know with chemotherapy, don't you, that you are probably going to lose your hair. But Lauren, even though you know it's going to happen, when it does happen, was it still a big shock to you when you looked in the mirror?

17:49yeah it was I think the initial kind of pulling the first bit out and realizing it's just fallen out in one go is never going to be a easy pill to swallow it just came out so effortlessly like just completely fell out I just looked at it and was like that's a big chunk and yeah it just you just look at it and you just it's really surreal it's really I've never it's one of those things in life it's really surreal but I decided again like I'm not going to just keep waiting to pull bits out and brush it and for it to fall out in the shower. So I just called my friend who was a barber and told her that it was falling out and asked the nurse if she could come in and shave it all off in one go.

18:24And she did. And that was my way of not having to go through the trauma, I guess, of like pulling chunks out one at a time and just take it all off in one go. And even the littlest stubs of my hair when it is shaved off, they even fell out in my pillow after that. But it was a lot less traumatic than massive, massive chunks every single day and shower and go through more trauma when I could have prevented it like I did and shave it all off in one go. For me, I was thinking I was watching a movie and oh, let me see how everything unfold. So when it's done on me that I, yes, I'm losing my hair, it was a very big shock.

18:58And, you know, looking at the mirror was very hard because I thought when I was looking at the mirror, I was just looking at somebody different. I was looking bald and different. I was looking darker because people make me look awful. And yeah, it was a very big shock for me. But with time, I just get to develop the self-confidence that even without the hair, I still look beautiful and I can still embrace my beauty, even regardless of the hair. I want to get into how other people view you. Do you think because your hair was such a big part of you, Catherine, that it really changed the way some people looked at you, even though they knew you might have cancer.

19:43Yeah, you know, you get those kind of when you're out. I wore a lot of hats and beanies and I thought I would look kind of normal, but also you lose all your hair. So it wasn't just my hair. It was my eyebrows, my eyelashes, like all of your body hair goes. I would be at the store and, you know, people would glance at me and they'd go, how are you? And then they'd look up and they would like, kind of not do a double take, but do a bit of a stare. Like she looks kind of ill. She has no eyebrows. She has no eyelashes. Does she have cancer? And then they would kind of glance back at you again. And I would just kind of go on and pretend nothing was wrong.

20:23But yeah, I did feel like people kind of sometimes would treat me a bit different, sometimes nicer, because I probably did look ill but in my mind I was like I'm okay Lauren you you met your fiance didn't you during this period how was that for you did you wear wigs a lot it was hard for me because I met my now fiance as I've been diagnosed with cancer it was just completely the same at the same time so he'd seen me with long hair down my back and even between treatments I would literally be dating him when I felt well enough and I couldn't do much apart from just like you know go sit down for a coffee and stuff but like because we're in such a dating phase and I really liked him I really wanted to just like make it seem like I look like the person that he'd signed up for if that makes sense which sounds sad because he's the most amazing guy but he um never judged or anything like that but for me and my identity that for me was just like holding on to the person that I was in a way even though I was going through all that so I wore wigs every time I saw him all throughout the time when I'd lost my hair he wouldn't have cared and he saw photos of me on Instagram because I was posting about you know my hair loss and stuff so he saw what I looked like without it on Instagram but I still couldn't bring myself in person to look like that in front of him because that's not who he met even though he wouldn't have cared so I slept with them on I wore these like little headscarves with the wigs to hold them on at night I wore caps I just I felt a lot more comfortable and it was a complete personal decision but I felt good when I wore them but I do remember one time a gust of wind had blown my wig off in front of him and I was mortified I was just like oh my god I tried so hard all this time like hot sweaty head like when I'm sleeping and I was like of course this is gonna happen and so basically the wig blew off the hat blew off and he literally just bent down picked it up helped me put it back on and it was like let's just carry on as normal and I was just like oh my gosh okay in the future I want to marry this man which we are now doing Prince Charming.

22:26But yeah, it just made me feel confident with him when I wore it and it made me feel more like me. And I'd take any of that feeling to have that break between chemo to just feel a little bit normal. So that was my decision why I wore them in front of him. Different parts of the world react differently to many things. And Lizzie, do you think it was harder for you being in Nigeria because of the expectations of people around you when it came to hair? and obviously because you were a hairstylist as well. Yeah, for me, it was very hard. It was very, very hard to go out because, you know, in Nigeria, there's this stigma, like, you know, with cancer.

23:05I usually tie or like put on a wig or a scarf. So one day I just decided to just go to the market without the wig or the scarf. And so many women, so many men was like, please cover your hair. What is this? you know they kind of make me feel bad about myself so they're making me feel oh um like you you look awful without a wig or a scarf just make it more the experience is nice i'm sure there'll be people listening to this who've been through something similar what advice as you've been through it would you give to them even though it feels like i guess your world's spinning out of control, you can still maintain like little snippets of control.

23:50I would just say, be really kind of gentle with yourself. And, you know, if you do have a little time window before you start chemo to take control, and say you've got long hair or a bob or whatever, use that time to try and experiment a little bit. So maybe cut it a little bit shorter. And just try and use that time as well, you know, when you've lost it to experiment with different wigs, you know, like, this is really a time when you can try and find little pockets of fun in it as well. And I used to get like pink long wigs down my back like Ariana Grande and really just think well I'm probably not going to be voluntarily bold again if I can you know help it because it'll probably remind me of it but I'm going to really make use of all the amazing wigs out there so I just try different colors different styles and try to find little moments of joy in such challenging times so yeah just be kind to yourself and try and find little glimmers of that if you can.

24:38I kind of agree with Lauren you know there's just be kind to yourself and I know there's a lot of toxic positivity out there. And I know I heard a lot, oh, well, it'll grow back. And you're going, but this isn't happening to you. Don't try to make your hair loss and your cancer treatment more palatable to the general public. Tell people how you really feel and don't say, oh, well, yeah, I guess it'll grow back. Be like, no, I don't feel very happy today. My hair is falling out in clumps and I'm feeling very down. Just tell people how you really feel because I think that's part of why people say things is because they think it's comforting and we all know half the time it's not so just yeah be gentle to yourself as well it's a lot to take on Catherine Lauren and Lizzie with their experiences of hair loss during cancer treatment thank you so much to them and our other guests this week for sharing their stories I'm Rahul Tandon and you've been listening to the documentary from the BBC World Service

25:52America is changing. And so is the world. But what's happening in America isn't just a cause of global upheaval. It's also a symptom of disruption that's happening everywhere. I'm Asma Khalid in Washington, D.C. I'm Tristan Redman in London. And this is The Global Story. Every weekday, we'll bring you a story from this intersection, where the world and America meet. Listen on BBC.com or wherever you get your podcasts.