Hannah

Age at interview: 21

Age at diagnosis: 16

Brief Outline:

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.

Background:

Hannah is 21 years old and lives at home with her parents. Her ethnicity is White British.

More about me...

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a very helpful appointment; for example, the dermatologist gave no information about wigs and signposted her to some outdated websites.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.

I think a big thing that’s missed out on is how rapid or how different alopecia can be, so it can vary. So some people can have like their hair go in two weeks and other people will be losing their hair over a matter of months and, or like years, and so that really varies and has in a-, it’s interesting to see the different effects, cos it can have the same effect on a person that’s lost it in like three weeks to a person that has lost it over a matter of years, but then, struggling with it for years can sometimes be tougher and also it makes it less likely to grow back as well, like your chances of your hair growing back depending on how much you’ve lost, go down. So I know that they say, I think it’s after the first year of alopecia if it’s under, if it’s over a certain amount of hair gone and without like good regrowth then you’ve kind of gone from a 70% chance or something down to like a 20% chance of it regrowing. But then it’s all just numbers and guessing because, you know, people with alopecia universalis, they say, you know, they’re less likely to grow their hair back and I know of someone that had all their hair grow back, no treatment, just grew back out of nowhere and that was after 10 years, which is really weird because you don’t know, you just, I think it’s possibly because it’s your immune system and it could maybe be a different stage.

Hannah noticed her hair regrew after she had been very ill.

We, we’ve kind of like, me and my family have spoken about it all the time and thought, y’know, could it be like physical health. Could it be like if you are eating enough healthy things and everything. And, my diet kinda changed recently this year and I’ve noticed that I’ve had better regrowth but it’s never been perfect kinda regrowth until I got ill and it kind of, it seems like my immune system’s kind of changed its direction into focusing on the illness instead of focusing on, on my hair. But no, not really [laughs]. Don’t know. 

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.

I’ve wondered if it will go on to my kids; I wondered that. I wondered if that—cos obviously you don’t know the comp-, complete like cause or anything and because it’s so unknown you think, well does that mean that your kids are gonna have it, like, can that be passed on? And it’s that not knowing. So I know that there are mothers and daughters and stuff and like people with alopecia in the family and it can run in family, I know that. So that makes me a bit nervous because I, I won’t want—well, as much as I, you could deal with it and you could get your family through it, you’d rather not have like your children have to deal with that sort of thing. But then at the same time, you know a bit better about how to deal with it, maybe, and they’d have the support of having their mum who had alopecia and things. But, yeah, it’s made me think about like, in the future of having kids if they’ll have alopecia.

Hannah used to see a dermatologist often about her alopecia for treatments.

I used to see them quite regularly, cos I used to try different treatments. So I started on like steroid lotions and steroid creams and like the shampoos and everything and I did all of that. And I had odd bits of regrowth, but then it would just fall out when I stopped using them. And then I went to having injections, steroid injections and I had about, I think it was four rounds, four or five rounds of them every couple of months. But when I finished again it would just fall out again and I had seven months of regrowth when I was having injections with the steroid lotions, but like, it was like a corticosteroid lotion. But then as soon as I stopped it like three months later, I was bald again, so it didn’t really work [laughs].

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.

The steroid injections ended up thinning in my skin quite badly. And obviously the immediate side effects were like I had a really sore head and headaches and stuff. But other than that I think it was okay, I think. But I do have a skin condition where I get like boils and everything and the, the steroid things were kind of making them worse, so that wasn’t really good. And again, the dermatologist would always talk to me and say ‘are you sure you wanna try this because that will then make your, like skin condition worse?’ and so it was weighing it up really. 

Hannah struggled with not having her hair and losing control over that part of her appearance.

So then I noticed like a lot of things got worse. I had like struggles with my eating and my appearance and I noticed that and my family noticed that I would focus more on my appearance, my physical appearance, because I didn’t have my hair. So I’d try, I’d never feel like I looked good enough basically and I’d try losing weight or toning up and just because I didn’t have my hair and I didn’t have the control over that and I found something to control. And it makes sense now, but at the time it was just, y’know, I was lost in my own little world of not knowing what to do. But I lost the control of losing my hair and like I found something else to gain control over. But yeah, it can really affect people. 

Hannah talks about changing her style and her ‘look’ and matching it with one of her wigs.

I change my style a lot depending on my hair, so sometimes, like if I wear my really crazy wig, my pink, blue and like purple wig, I’ll have more of a kind of bright, bubbly look and like sometimes I’ll look more sophisticated if I wear just a brown one, like wig, so I do kind of – I do style my look according to my hair sometimes. So, I’ll y’know, depending on what-, I did that today, depending on what I was wearing, I was like, ‘okay, so what wig would look good or do I just go with my short hair?’ And y’know, so, yeah, I change my look according. 

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.

It was really hard, because it’s like you want to invest in something, but you have no idea about it. So, you just turn up to a shop and it’s like, when you’re going to buy something and you have no information on it and it’s really hard to kind of understand, there’s all these different things and different prices and you don’t know if that’s good or not compared to what it is. And like, when I first got the wigs, I didn’t know about different types of wigs; so when they were telling me it was like a monofilament top and it means like you can see like, it looks like it’s coming from the scalp, it looks like you’ve got skin underneath. And that was amazing to me. And like, I thought that’s really cool. And then, a couple of years later I found out about lace fronts, which looks like it’s coming from your scalp even more at the front, so it’s even more natural and so it’s like-, I’ve noticed, I’ve kind of gathered information over the years, so from when I first got my wigs and also paying like, the biggest thing like I regret is that I didn’t have information on being able to get free wigs. So, they didn’t tell me and when we did ask if I could get wigs on the NHS, they said ‘no’ and we don’t really know why. But when I turned 18, as soon as I turned 18 they said I could get wigs, but then I had to pay for a prescription and it was £65 per prescription. So it, yeah, that was really frustrating, cos then I’d been paying hundreds of pounds for these wigs when I could have been getting them free. And that was quite annoying [laughs]. But over the years I’ve kind of picked up all different wigs. So, I think I’ve got about 20 at the moment. 

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.

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.

What was the process like when you went to get them done?

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.

So then I noticed like a lot of things got worse. I had like struggles with my eating and my appearance and I noticed that and my family noticed that I would focus more on my appearance, my physical appearance, because I didn’t have my hair. So I’d try, I’d never feel like I looked good enough basically and I’d try losing weight or toning up and just because I didn’t have my hair and I didn’t have the control over that and I found something to control. And it makes sense now, but at the time it was just, y’know, I was lost in my own little world of not knowing what to do. But I lost the control of losing my hair and like I found something else to gain control over. But yeah, it can really affect people, so. 

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.

I started gymnastics recently. I haven’t been for a while, but I had to decide that I was-, I had no choice but to go bald the first time I went because I thought that was the best way to get round it, because I couldn’t wear anything on my head, because as soon as I’d do any kind of flip or anything, my hair would come off, or my hat would come off and-, or I’d get too hot. So I had to push myself out there and just be like ‘okay, I’m bald’ and go. And then that made it easier, cos then I didn’t have to worry about the next time I went. Even if I wore a headscarf, cos they knew I didn’t have hair under there. So yeah, things like that. But then, it took a lot of building up to get to, get myself to actually go without a wig, so. Yeah.

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.

Yeah, I’ve had a lot of like misunderstandings of people thinking I have cancer and stuff and. When I was on holiday I had a couple of people come up to me and y’know thinking I had cancer and they’d had cancer and they were really, really nice and positive, because I’d bought, I’d just walked around for the first time in four years since losing my hair, it was the first week I’d gone without covering my head once. I’d never gone week without not covering my head. And I just didn’t really mind and I just did my own thing and two people came up to me and it really stood out to me that it was two difference experiences. One person, I then said, y’know, ‘oh no, actually I have alopecia’ and he was like ‘oh yeah, I used to have alopecia blah, blah, blah’. And we really got on and spoke about it and it was easier to talk to him, cos he understood. The other person, when he questioned me and said that he’d gone through cancer, it made me feel quite bad and awkward, because [laughs] he made me feel quite bad and awkward, because when I said it was alopecia, he kind of had a blank look on his face like he didn’t know what it was, so he didn’t know how to answer. And the conversation just kind of stopped and it was really awkward, because even when I explained what alopecia was, it was almost like he felt tricked by me, because he thought it was cancer. And obviously then I felt really bad, because I didn’t wanna like miscon-, like anyone to kind of get the wrong message or anything, so, yeah. But I’ve never had like too much of a negative reaction in person. I have online, but I think people find it easier to kind of be a bit more harsh online than they do in person. 

Hannah was upset when someone commented on her Facebook page about changes in her appearance.

I was on it was my photos on Facebook and I hadn’t like-, I didn’t have all my photos private. And  this guy out of nowhere, just started commenting, ‘why have you done this to your hair? You looked really beautiful with your lovely long hair’ and commented on about five or six of my photos. And then he was like, ‘you’re such an idiot and blah, blah, blah, and shaving it’. And he just jumped to the gun thinking that I’d shaved my head and someone else had commented, a different person saying, ‘oh, the things you do nowadays for fashion’. And again it was that, it was that like, it wasn’t just judging someone, it was criticising them before you even kind of make the right judgement. You just criticise straight away and obviously then, I was just like, ‘you need to educate yourself’, y’know, blah, blah, blah. But y’know some people reacted well and some didn’t. One of the people just didn’t get the message. And so I had a couple of people having to talk to them because they just wouldn’t leave me alone. They just wouldn’t stop commenting and obviously I said it didn’t bother me, but it actually really affected my confidence. And the next week or so, I wouldn’t-, I didn’t upload any more photos. All my photos were private. I didn’t go out without a wig. And I was just y’know more conscious of what other people could actually be thinking, cos that was a real person doing that, it was a real person writing that. So that kind of brought it more, y’know, like real to me. It made it more real.

Hannah compares her mum and dad’s very different approaches to her alopecia and ways of giving support.

I’ve noticed my mum really struggled with the fact that I lost my hair. Not because I was bald and she didn’t like it or anything. Just because she was scared for me on how it could affect me and obviously I’m her baby and she’d want that to be okay. It’s small things like I notice even now like she would be like, “Are you sure you wanna to go out without a hat?” or, “Are you sure you don’t want to take a hat with you or a headscarf?” And that kind of her questioning makes me all the more nervous. But she only does it because she cares. But she obviously gets more-, I’ve noticed that a lot, a lot of my friends have also said the same thing about their mums. They kind of, they find it hard to deal with. So, also, the first time that I was losing my hair and I shaved my hair off. When I shaved my hair off, my mum couldn’t be in the room. She couldn’t bear to be there. And then when I was losing my hair after regrowth she was the one crying on my shoulder. So I’d be supporting her, which was fine, because she was finding it so hard, cos she didn’t, it, she didn’t have that control. She didn’t want her child to be going through it. So I know my mum found it really hard. And my dad like obviously found it hard and doesn’t want me to have alopecia, but he has a different kind of point of view and perspective and I kind of, I always kind of went towards that point of view which is good. It was just like, y’know, it happens. You’ve just got to deal with it: and so, straight away like, I’ve had like another patch come up and it was un-hide-able, he’d just be like, “So you going to shave it off?” I was like, “Yeah, I might go this colour first and dye it pink or whatever.” And my mum found it really hard to kind of accept and sometimes she still does, but she is a lot better now, but she found it really tough just to kind of see that I wasn’t just crying and breaking down about it, because obviously you know, it’s a bit of a hard thing I think for a parent to see, especially when I had my long hair.

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.

No. I didn’t really have, the friends I’ve got now, I didn’t have until two years ago. So they met me when I actually had regrowth and it was quite tricky at first to explain to them that I had alopecia, because my hair started falling out three weeks after meeting them. And I started wearing hats and actually one of my friends wanted to grab my hat and he was like, “Ooh”, he went to grab my hat and I was like, “No”. And I got really protective. And now we laugh about it, because he like thought ‘whoah, you’re biting off my hand a bit’. And now we laugh about it cos he realises that I had like no hair under there. I was just like bald on top basically. But yeah, it was fine kind of once I’d told them, I just tell them really quickly, so I tell people and then I go like, “Oh yeah and I’ve got this wig and that wig.” And, I do it in conversations. So I’ll bring it up in conversation, so if someone’s talking about hair, I’ll go, “Oh yeah, well, I got this wig the other day in blah, blah, blah.” And so it makes it easier. I don’t really talk to them that much about actually not having my hair, I think just because it’s just a part of me. So they don’t see it as anything needing to be spoken about because it’s just me. It’s just Hannah with patchy hair. So [laughs] that’s it, really. 

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.

I’ve missed the prime time in my kind of teenage years of combed hair and straightening it and having French braids and doing all of that; I can’t do that. And that gets really I get kinda upset and annoyed. Like all my friends, me and my friends were going out the other day and I just had a bog standard wig that I just stuck on and had to clip back, because like the fringe was falling in my face and that was it, it was done. And then, all my friends were straightening and curling their hair and talking about getting highlights and I got a bit like, not annoying or anything, but it’s just something you miss out on. So you miss that sometimes, or I do anyway, so. 

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.

I always think of what the job would be and like what I’d do with my hair and it, like with everything, I always have to think out what I’d do. What hair I’d wear. If I’d wear hair. If I’d decide to tell people and change my hair up and that sort of thing can be tricky and things like I couldn’t do anything that would require me having my hair tied up high, cos I couldn’t, I couldn’t do that. And so, or having my hair really tied back, I’d have to find a different way around it. And so it makes you think about that. But no, I’ve not thought too much about it just yet. But it’s like with everything you have to approach something with a, like any situation with a certain kind of plan as it were and like with college I decided to wear wigs and then y’know people knew I wore wigs and so I changed it up. So you’ve got to kind of assess how you feel in that situation. 

Watching YouTube videos of people who have alopecia helped Hannah to cope with her hair loss.

So the first thing I did was, I actually looked at, I typed in ‘alopecia’ on YouTube and there was a video that came up and that was the video that inspired me to shave my head. So, it was just a girl who was 14 and she shaved her head because alopecia had affected her. And yeah, that was the biggest thing for me. So that’s why I started kind of making videos to help people, because I actually found the kind of help and support through videos online. So, it was more of a personal connection. It wasn’t just someone writing down. You could see what was going on. You could see that it was actually okay. And, I like personally just found it much nicer to kind of watch people online with alopecia and stuff and then, throughout the years I’ve got more into talking to people with alopecia and helping people out with alopecia and making my own videos about it and getting the kind of feedback from that, which was really positive.

Hannah thinks doctors should consider emotional support for alopecia more, but that they also need to be aware of stigma associated with this.

It’s gotta kind of be an assessment of what you think you can offer and if not what you can maybe suggest to a person so like if someone’s really struggling you can maybe say ‘oh well maybe, like looking down the mental health route would be okay’. But then you’ve got to I think be very careful of how you put that across, because obviously people still have those old kind of views about mental health and stuff. So that can then scare a person or that can put a person off. And yeah, but then with information just from anything, whether it’s mental health to wigs or to treatment or even just like sites like an online site where you can see that people actually deal, like deal with it and have it and stuff, so. 

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.

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.