Hannah
Hannah had rapid hair loss when she was 16. Alopecia knocked her confidence a great deal and she struggled to cope with it at first. She found alopecia support online and has since helped others through making her own inspiring videos.
Hannah is 21 years old and lives at home with her parents. Her ethnicity is White British.
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Hannah first noticed some bald patches on her scalp when she was 14. She wasn’t concerned at first and thought it was due to over-straightening her hair. However, at age 16, she rapidly lost much of the hair on her head. It was very shocking and because it all happened in the space of just 10 days, she didn’t have much time to process the GP’s diagnosis of alopecia areata. Hannah and her parents travelled some distance away to see a dermatologist as she otherwise would have had to wait several months. It wasn’t a very helpful appointment; for example, the dermatologist gave no information about wigs and signposted her to some outdated websites. Hannah has since asked other doctors and was once told that she would have to buy her own wigs, so it was several years before she discovered that she was actually entitled to them on the NHS. Hannah has tried prescribed steroid creams, shampoos and steroid injections. Some of these help hair regrow at the time but it would then fall out again as soon as treatment stopped. She was advised to stop the steroid injections after a year and a half because the skin on her scalp was becoming very thin. It was at this point that Hannah decided to suspend treatment.
Hannah gathered information about wigs over time. She feels she missed out on the “prime time” of her teenage years when many people are experimenting with different hair styles. This is something that Hannah’s keen to do now when possible – for instance, she has turned upsetting situations when regrowth hair begins to fall out into opportunities to play with exciting styles. She’s dyed her hair all sorts of bright colours and tried out a Mohican. She currently has about 20 wigs as she likes to change her look often, matching outfits and make-up. Hannah had her eyebrows tattooed on as she found it very time-consuming and limiting to have to draw them on with make-up. She had a really positive experience with the tattooist and loves the outcome.
Having alopecia has been a “rollercoaster” of emotions for Hannah. She found it very tough to cope with having no control over what was happening with her hair loss. She began to focus a great deal on her appearance and struggled with eating for a while. She also took to wearing hats at all times when first diagnosed with alopecia, including when she slept, using these as a kind of “comfort blanket”. She now sees these things as part of her acceptance journey. Online support has been incredibly important in building up Hannah’s confidence. She started making her own videos to share online about her experiences. She has since received messages of support and gratitude from people all over the world in response. She adds that it’s important for people with alopecia to have in-person support as well as that available online. She described it being a positive experience to meet and socialise with other people who have alopecia, including those her age and who live in the same area.
Her advice to other young people is to know that they are not alone with alopecia and to do what’s right for them, whether this be wearing wigs and scarves or not. Hannah also thinks that doctors should offer mental health support but cautions that this must be done carefully because of lingering stigma. For example, she says that people with alopecia may reject offers of mental support at first but then wish they had taken it up at a later date, so it’s important that doctors keep offering.
Hannah says it’s important to think about how quickly alopecia happens for different people as well as how much hair falls out.
Hannah says it’s important to think about how quickly alopecia happens for different people as well as how much hair falls out.
Hannah noticed her hair regrew after she had been very ill.
Hannah noticed her hair regrew after she had been very ill.
Would we be able to talk a bit more about how other health conditions interact with your alopecia?
Yeah. I don’t really know how, like I’m not, like majorly good with all medical stuff, so it’s all theories really. But I got quite unwell with a virus which basically, in bloods, was showing that my infection markers were extremely high. So, they were fighting, my body was fighting off something, and like the antibody, the ANA or something, the antibodies were very high and everything. And then we noticed about a month later that my hair was growing back a lot better, so the best it’s ever grown back and that was since being unwell, so since my body was kind of fighting off something very big, like it was, like stopping, y’know it stopped attacking my hair and it was attacking whatever illness I had, so, yeah. We think it could be a reason, but it’s all theory.
Hannah talks about genetics and what it might be like having children with alopecia.
Hannah talks about genetics and what it might be like having children with alopecia.
Hannah used to see a dermatologist often about her alopecia for treatments.
Hannah used to see a dermatologist often about her alopecia for treatments.
Hannah’s seen dermatologists in different places and was given conflicting advice about her NHS wig entitlement.
Hannah’s seen dermatologists in different places and was given conflicting advice about her NHS wig entitlement.
But then, the annoying thing is, it changes depending on where you are. So, area to area, it will have different rules and it gets really frustrating. Especially people in Scotland, a lot of them get four wigs on the NHS a year and here in England you only get two wigs on the NHS, synthetic wigs, and some people can like write to their local MP and get a human hair wig, kind of accumulated to the same price as two synthetic wigs on, on prescription. But other areas will completely say, “No, you can’t do that”, so it changes, really.
And did you have that difference between where you originally lived and then when you moved here?
Yeah, it was much harder to get wigs where I used to live. Whereas here I was actually offered wigs and also it was-, wasn’t as expensive and it was a lot better and easier. So, I did notice a big difference because I had the opportunity to kind of try two different areas and they were only an hour away from each other, so they’re not a massive different- and there was only a couple of boroughs in between and it’s really weird to see kind of the difference of how it’s dealt with, so yeah.
And where did you first hear that you could get NHS wigs? Cos you said that previously doctors had said you couldn’t?
No, I actually found out from a friend online and she said that she got a wig on NHS and I was like, “Really, how did you do that?” And they were like, “Well, you’re entitled to them”. And so then obviously you look it up and you see that you’re entitled, what you’re entitled to and like you look up all the official charities that say, “You’re entitled to this many wigs,” and all of that. So then we questioned, that’s when we actually questioned the dermatologist and they’d said, “No,” to us. And then I saw another dermatologist and I was like, “Yeah, you were meant to be getting wigs from 16. Weren’t you?” cos I was wearing a wig at the time. So he thought I’d got that from the NHS. I was like, “No, I’ve been buying these wigs”. So yeah, that’s when, y’know, started getting, getting prescriptions, so. But then I only get a free prescription at the moment because I’m on ESA [Employment and Support Allowance] so I’m kind of entitled to that, whereas if I didn’t have any problems, I’d be having to pay prescription, so. Each wig I get, I have to pay for a prescription.
Hannah talks about the side effects she had from steroid injections.
Hannah talks about the side effects she had from steroid injections.
Hannah struggled with not having her hair and losing control over that part of her appearance.
Hannah struggled with not having her hair and losing control over that part of her appearance.
Hannah talks about changing her style and her ‘look’ and matching it with one of her wigs.
Hannah talks about changing her style and her ‘look’ and matching it with one of her wigs.
Is that like make-up and jewellery as well as clothes or is it the-
Yeah.
whole thing? Yeah?
It’s make-up as well, make-up kind of, I’ll style, depends, so, if I have really dark hair, I might wanna go through like, kind of heavier like eye make-up look and everything. And yeah, I just change it.
Hannah hadn’t known that she was eligible for free NHS wigs and had been buying her own wigs for a few years.
Hannah hadn’t known that she was eligible for free NHS wigs and had been buying her own wigs for a few years.
Oh wow.
Yeah. I like to change my look. So, I change it all the time. Yeah.
Could you tell me a bit about the variety of wigs that you’ve got?
Yeah, I’ve got everything from kind of, standard like really nice like brown and blonde. I’ve got a brown and a blonde human hair wig. And then, I’ve also got a pink, purple and blue wig, just for fun. And I’ve got different types, so I’ve got lace front. I’ve got a suction wig, which is really cool. It, but I need to be completely bald for that. So when I was, like shaving my head down completely smooth, I could wear the suction wig and it’s like silicone, so it’ll just stick to your head. And then, like other times I’ve got wigs that, when my hair grew back, I got a wig with like clips in it so I could secure my hair down a bit. So, yeah, it’s just, I’ve got all different – it’s quite fun.
For Hannah, although getting her eyebrows tattooed was “nerve wracking” at first, it has made a big difference.
For Hannah, although getting her eyebrows tattooed was “nerve wracking” at first, it has made a big difference.
That was really cool, it was really nerve wracking though. I actually looked for four years until I actually got them done. And it was only because I had a really lovely lady contact me and just say, my, like, one of my friends had had their eyebrows done by them. And she just contacted me and said, ‘You know, your friend’s mentioned you, would you like your eyebrows done for free?’ Which really took me by surprise, because eyebrow tattooing was a lot like, can be a lot of money. And being a student, I’ve not got that money to kinda spend, especially with wigs, they cost quite a lot anyway; if I want quite a nice human hair wig or anything. So I always put it off. But, since having my eyebrows done and my friend’s said it too, would never turn back, cos it’s so much better. It’s easier than, y’know, the worry of if you go swimming or anything or if you get too hot and sweaty or if you wipe your eyebrow. I used to always wipe my face and then realise I’ve wiped my eyebrows off. And so, and also it’s really like time consuming, so, like I’d spend like hours sometimes trying to get perfect eyebrows and that was very like it had a big impact on my like, y’know, my self-esteem and everything, because I was nervous about how it looked or anything and I’d always bug people and be like ‘are you sure they’re okay?’ before I’d even walked out the door. So, yeah, I’m so happy I’ve got them.
Hannah talks about what it was like to getting her eyebrows tattooed.
Hannah talks about what it was like to getting her eyebrows tattooed.
It was really quick and easy actually. It was, it was literally you just like, I met her and went into this like nice room and laid there and she like drew free hand what I’d like them. So she looked at some photos of like where I’ve drawn on my eyebrows and like said, y’know, I quite like this shape and this is what they were before and she looked at them all and she said, ‘This suits your face shape.’ And we agreed on what I kinda would liked. So then she pencilled them in to how I’d like them. And then, I got to keep looking and kind of y’know, helped her maybe if I wanted it a bit lower, I’d say ‘oh, can I have this part lower?’ And then she started to tattoo them. So once she’d drawn them on, it was just a matter of kinda putting the ink on and that was it, really. And so, yeah, I’m really happy with them [laugh]. Then we had, it was two, it was a two part process, so I had them done and then I think it was two months later, I think, I had to go back and get them recoloured basically, because they fade. It’s really weird, cos the pigment of the skin you kind of get your, like get your eyebrows tattooed on and then they can fade a lot and then you’ve got to go get them redone and it depends how your skin takes to it, because she doesn’t like, she asks you, y’know, ‘does your skin-, how’s your skin affected in some situations?’ So it kind of helps her know how dark she needs to go or how much ink she needs to put on.
Hannah struggled with her appearance when she first had alopecia and this affected her eating and dieting.
Hannah struggled with her appearance when she first had alopecia and this affected her eating and dieting.
Has that changed over time, the sort of focus on controlling other aspects of appearance?
Yeah well, it kind of, I think it just all changes like, different things happen obviously in your life and then, I kind of had a realisation of that I didn’t have a healthy lifestyle and I wanted to get a lot healthier. And so, I started improving on that and then I realised that actually my hair started to grow a bit better because I had a better diet and I was, I was just naturally healthier and I was happier as well, because like I was so malnourished that I didn’t think very clearly. So, when I kind of, was a lot healthier, I was actually feeling a lot better about myself and I could feel confident about myself. And that helped with the anxieties then because I didn’t get as anxious. And I just, it was more of an acceptance. It’s like a massive acceptance journey really. It’s like a journey through accepting it and some people can accept it straight away and like although it’s still hard and it’s not nice to deal with, they can kind of find a way of storing that sort of thing.
Hannah recently started doing gymnastics and felt she had “no choice but to go bald” from her first lesson. Although it was tough to take that step, it has made it easier.
Hannah recently started doing gymnastics and felt she had “no choice but to go bald” from her first lesson. Although it was tough to take that step, it has made it easier.
What was it like? What was the actual experience like of going?
It was fine. They didn’t say anything. No-one said anything. No-one seemed to care, y’know. I mentioned a little bit about not having hair. [Whispers/talking to dog - She’s kicking the sofa]. I mentioned a bit about not having hair just like in a joke or something and that was it. It was just a casual thing. So again, it was that thing where it builds up bigger in your mind than it actually is.
Hannah’s alopecia has been mistaken for the side effects of cancer treatment. She’s had situations where other people have opened up to her but also times when it has been awkward.
Hannah’s alopecia has been mistaken for the side effects of cancer treatment. She’s had situations where other people have opened up to her but also times when it has been awkward.
Hannah was upset when someone commented on her Facebook page about changes in her appearance.
Hannah was upset when someone commented on her Facebook page about changes in her appearance.
Hannah compares her mum and dad’s very different approaches to her alopecia and ways of giving support.
Hannah compares her mum and dad’s very different approaches to her alopecia and ways of giving support.
And it helped having my dad dealing with the way that my hair fell out, because it kind of then gave me someone to kind of, something to focus on. So it gave me a way of dealing with it. So, he was more positive. He was just like, “Oh well, it really sucks, but your hair’s fallen out, that’s just the way it is”. And it was very factual and to the point. And then that kind of helped me just deal with it and be like, yeah, actually, y’know, my hair’s fallen out and I can’t do anything about it. So, I just, I’ll do the best I can. So then we had fun with it, so like if my hair would start falling out after regrowth and I couldn’t like hide a patch, he’d then be like, “Ah, so you gonna shave it?” I was like, “Yeah, I might shave one side”. I’ve had like a Mohican before and I’ve had pink hair and blonde and red, I think I’ve tried everything. And it makes it more fun then. And like, it’s like you then find the positives in what’s happened. So, I would never have had a Mohican. Like I’d never have thought to go from long brown hair to a Mohican. But because that happened, it makes you kind of explore and just have more fun. And so you’ve just got to try finding the perks of it, really.
For Hannah, bringing up her alopecia when her friends are talking about hair has been a good way to tell others.
For Hannah, bringing up her alopecia when her friends are talking about hair has been a good way to tell others.
So would that be new people that you would bring it up into conversation with?
Yeah. I’ll-, depending obviously on what we’re talking about and if I want to tell them, or anything. I normally bring it up in conversation. So I’ll look for a kind of way to get back into a conversation, if I can. So if there’s kind of like an opening to say, “Oh yeah, I have alopecia.” Or, I think, normally I speak about hair and then I kind of put it in with that subject of, “Oh yeah, I actually lost my hair a few years ago, but I’ve got wigs.” And I do it like that, so, yeah, it’s okay.
For Hannah, wearing a wig when her friends were styling their hair and talking about getting highlights made her feel she was missing out.
For Hannah, wearing a wig when her friends were styling their hair and talking about getting highlights made her feel she was missing out.
How do you cope with it in that situation with your friends?
I don’t know. I think just because I had my friends and they, like, they were really understanding and everything – I was fine because the biggest thing-, I know everyone deals with it differently, but I really like playing with other people’s hair, so my friend loves her hair to be played with. So I was just doing all sorts of styles on my friend’s hair. So like kind of added up to it. But y’know, they know, they know that I miss my hair in a way, but I don’t kind of dwell on it for too long, cos I don’t let myself. I think I’ve built up a barrier now, so, I kind of put up that barrier so I can’t let it affect me, because I used to get really excited over regrowth. And then, it would fall out and the disappointment of it falling out was more upsetting than just not having my hair. So I kind of, you build up a natural kind of barrier or way to deal with it, so I just, you know, it’s not too bad.
Hannah says a new job would involve thinking about what hair she would wear and whether to tell people she has alopecia.
Hannah says a new job would involve thinking about what hair she would wear and whether to tell people she has alopecia.
Watching YouTube videos of people who have alopecia helped Hannah to cope with her hair loss.
Watching YouTube videos of people who have alopecia helped Hannah to cope with her hair loss.
Hannah thinks doctors should consider emotional support for alopecia more, but that they also need to be aware of stigma associated with this.
Hannah thinks doctors should consider emotional support for alopecia more, but that they also need to be aware of stigma associated with this.
Could you say a bit more about sort of conceptions people might have about mental health support and you said that it might be off putting for somebody?
Yeah, like I know that when I first kind of got offered support for my mental health issues, I had totally different ideas of what it’d actually be. And although like that is changing in society, still people get scared of-, because people are naturally scared of the unknown so, if, also, if-. It’s a grieving process as well, so if you’ve maybe not accepted it, you could just be like ‘no, no, no, I’m fine. I don’t need that help’. And then actually they might be thinking ‘well, I wish I’d of taken that help’ and then they might feel like they can’t go back to the dermatologist and then say ‘well I’m actually struggling now’ or y’know. It took me a while to actually cry over the fact that I’d lost my hair, cos I wouldn’t let myself cry over it. And it literally took a good year or so until I actually let my emotions kind of affect me in the right way that they should be. So yeah, it depends on how a person’s dealing with it and how they will take a certain suggestion or anything.
When she first lost her hair, Hannah always wore hats at night.
When she first lost her hair, Hannah always wore hats at night.
It was weird to get used to the breeze as well. So I was kinda cold all the time and so that was weird and I’d sleep with my hat on and like, so that affected-; that was different cos I never used to even wear a hat let alone sleep in one, so, yeah. Now hat’s my best friend.
What was the reasoning at the time that you would sleep in a hat?
I’m not too sure. I think it was a kind of comfort thing, cos you feel more comfortable when you’ve got some kind of y’know something around you, and I think it made me feel warmer. Also I lost my hair when it was snowing. The first time I lost my hair and it was snowing, which wasn’t the best time to lose your hair [laughs], because there was quite a breeze. But yeah, so I just got into wearing hats. And I think it was a mix of covering up and then also it was my kind of comfort blanket, it was my little comfort blanket. So I just wouldn’t take it off.