Becky

Age at interview: 23

Age at diagnosis: 14

Brief Outline:

(Text only clips) Becky has had alopecia areata since age 14, with three periods of time when she had multiple bald patches. She uses a topical steroid solution, although thinks that being emotionally settled helps her hair regrow too. The impact on hair styling, including for horse riding, is a key concern for Becky.

Background:

Becky is 23 and works as a paralegal. Her ethnic background is White English.

More about me...

Becky has had alopecia areata since she was 14, with three more extensive periods of multiple patches. She remembers hearing the word ‘alopecia’ and immediately being frightened about going fully bald. A GP referred her to a dermatologist who gave her a topical steroid treatment for her scalp and, with time, Becky’s hair regrew. However, she’s since had a second and third episode of alopecia. She thinks that her alopecia is caused by stress: “it’s like it’s my body’s way of showing that I am stressed or I am down about something”. Her current alopecia patch has been there for about 8 months; she thinks that this is because she experienced a long period of uncertainty about getting a job. Becky says it can be a “vicious circle” whereby having one patch of alopecia leads to worry which then triggers more patches to develop. She finds that her hair regrows quickly but unevenly and tends to come back like “really fine baby hair”. Becky’s alopecia has only ever affected her head, mostly on her scalp around her ears and neck, but she also had one small patch in an eyebrow. 

At Becky’s first appointment with her GP, she was given a referral to a dermatologist. Waiting for the appointment felt like “absolutely ages” because her hair loss was causing a lot of distress. Becky and her mum had discussed the pros and cons of likely treatments, preferring topical steroids rather than tablets or injections. The dermatologist also took a sample of her skin as the area where the hair had fallen out was sore and itchy with raised bumps, though the skin of her bald patches has not been like this since age 19. Becky visits her GP to get a repeat prescription of the topical steroid solution whenever her alopecia returns. She likes that the steroid solution gives her more choice about where exactly to apply it and how often to use it. Becky isn’t fully convinced that the steroid solution causes hair regrowth as she thinks it’s more to do with feeling settled emotionally. However, she continues to use the treatment in case it does help. One downside, though, is that the steroid solution makes her hair very greasy. In addition to trying home remedies like putting oats and honey on her scalp, Becky has tried lots of shop-bought shampoos and vitamin supplements, estimating that she’s spent £1,000 on these during the time she’s had alopecia.

Becky says that having alopecia areata doesn’t affect her confidence much now but it can make her feel a bit uncomfortable and worried when out socialising. She often finds herself comparing her hair to that of other women or panicking that people might have seen her bald patches. Becky says that she has only a very occasional “blow out” of being upset. Her friends are supportive and, for example, make sure that Becky is happy with any photos they take. Becky opts for hairstyles which cover her alopecia patches but finds these very limiting. She’s heard comments from some people suggesting that styling her hair too much could cause hair loss. Although she disagrees that this is the case for her alopecia, she says it “gets ingrained in your head then, so you don’t want to pull it too much”. Occasionally, Becky says she gets to a point of being “fed up” and so she’ll have her hair cut or dyed. Horse riding is a key hobby of Becky’s and means that she has to put her hair up a lot. She doesn’t like pulling it back and finds that she needs a lot of hairspray to pin down shorter hairs regrowing at different rates. Things like clearing out her hairbrush and bath plughole have become very normal parts of Becky’s routine, as they can quickly fill up with her loose hair. 

Becky’s advice to other young people with alopecia is “don’t let it get you down” and to know that most people aren’t as concerned about it as you might think. She encourages others with alopecia to talk to the people around them about how they can help. For example, Becky says there are lots of examples of things that people should avoid saying to someone with alopecia, such as “my hair falls out in the shower as well.” Whilst some comments may be well-intentioned, Becky adds that they can feel dismissive and shatter confidence. Becky has looked online to see about new information each time her alopecia has returned. She has found some blogs which make her feel less alone, as she doesn’t know anyone in her day-to-day life with the condition.

Becky finds it’s difficult to tie her hair up when patches are regrowing as the hairs are different lengths.

At the moment, I have got a patch that’s growing back and it will grow typically about just over an inch a month. So it does grow really quickly. But when it does grow back it is really fine. It’s like really fine baby hair. And it gets to a point, because I put my hair up a lot, because of riding or because I’m outside a lot in the wind, my hair goes up a lot. And then you get the problem that the little patches that are growing back aren’t quite long enough to fit in the bobble. So they will stick out. So it’s hairspray galore trying to get those back down. But yeah, it’s really fine. It does grow quite quick. But the problem is that it never all grows back at the same time. So you’ve got some where it’ll be two or three inches long. And in some where it’s just an inch. And as well it’s never-, cos my hair’s, you can see, it’s quite long. My hair’s past my shoulder, so it takes ages and typically all of my patches will have grown to hair length and then I will start losing it again. So it’s different patches that, that fall out at different times, so there’s never-, it’s never all one length. My hair it’s always got random bits growing and some bits longer than the others. 

When she was younger, Becky thinks her bald patches were affected by dermatitis (eczema). It would sting to put steroid treatments on the skin.

And did you say that when you were younger, when you’d have patches of areata, that they’d be sore and bumpy?

Yeah. When I was younger they were a lot, it was a lot more of a skin thing. I don’t know why it looked it quite like-. Cos at first they thought it was like a dermatit-, well, I thought, mum thought it was like a dermatitis-y thing because it used to get quite flaky, dry, sore, raised spots and, like I say, when I used to put the steroids on it did used to sting. So I can see how people would think it was linked with a skin thing. But it doesn’t, as I say, as I’ve got older it doesn’t do that any more.

What sort of age do you think that started to change?

Probably about 19, 20. Yeah, about age 19, 20ish that stopped. It used to itch as well. I can remember it itching because it was flaky and sore and dry, it used to itch. Well it doesn’t itch any more when it falls out. It’s not-, you don’t notice it as easily because it’s doesn’t itch and it’s not spotty like that. But it used to be really bad. 

Becky initially thought a bald patch was due to over-styling her hair. When it didn’t grow back, she went to her GP and was diagnosed with alopecia.

I used to scrape it back a lot and it was permanently straightened. At one time, I dyed all the bottom of it bleach blonde and so you think ‘is it hair dye? Is it hairspray? Is it straighteners? Is it blow drying?’ So, at first you don’t go and get it checked because you do just think ‘oh I’ve pulled it out because I pulled it too tight or I’ve done something’. But, then when after a bit when it doesn’t grow back or it starts to become more and more, that’s when I think you realise that it’s not just you’ve pulled it a bit too tight, it’s something else. So you need to go and have it looked at. 

How long do you think that would have been between you discovering the first patch and then when you saw your GP?

I don’t know. It wouldn’t have been long, because I was a lot younger I would have panicked. Well, I can remember panicking. So, it, I would’ve between-, it would have been no more than a few months, because if you think about like your eyebrows or something, if you pluck ‘em out within a few weeks they’ll grow back. So I think if you think ‘oh, I’ve just messed with it too much, I’ll leave it a bit. And then after a few weeks, it doesn’t start growing back – that’s when you think ‘no, there’s something a little bit more to it’. So at the very most it would have been two months, at the very most.

Becky talks about the parts of her scalp which have been affected by alopecia.

It tends to be a lot around my hair line. So, a lot at the side just above my ears it tends to go there a lot. And I do lose it at the back quite a lot. My hair, when it grows back normally at the back is like really fine baby hair. My hair at the back is never like the rest of my hair, so I’ve lost it-, every time I’ve lost it I’ve lost it at the back at the nape of my neck. Tends to be random patches on the side and just up from the back. I’ve never lost it on the top, never, touch wood. Never lost it on the top. It tends to be small patches, like I say, 10p patches. But they do sometimes merge into one, which is what happened when I lost it a lot at the back. So it tends-, but it’s-, it tends to be more at the back and the sides, but touch wood it’s never been right at the front near my parting or on the top. 

Becky says her alopecia is triggered by stress, but that hair loss is also a source of worry.

See they said, with alopecia areata, they say they don’t really know. But they say that it can be quite stress induced. So I tend to find that mine’s fell out a lot around exams. Around times when I’ve been a little bit unsure about things, so unsure about jobs, starting new jobs where I’ve been a bit stressy. It’s when you’re down as well. When you feel down about things, but obviously that links to stress. If you feel down because you’re not sure about a job or a new job or you’re not sure about how your exams are gonna go or you’re waiting for results. So my patches tend to come when I’m down about things or stressed about things but in myself I never feel-, I’m not a depressive person and I’m not a stressy person. So in myself I never feel it, but it’s like it’s my body’s way of showing that I am stressed or I am down about something. But if you say to me, “Do you feel stressed?” I’ll say, “[hm] A bit, but not really.” But it’s like my hair is, is saying, “No, everything’s terrible, I’m really, really stressed,” and that’s when it comes out. But, I personally never feel agitated or-. And I think sometimes patch, a, a patch becomes patches, because your subconsciously worrying that your hair’s falling out. 

A cycle?

So, yeah, it’s a vicious cycle. Yeah, because you’ll see one – like this one that I’ve got at the moment, obviously that’s at the side of my head. So I see that and I think ‘oh my God, if that gets any bigger’ or ‘oh my God, is that gonna go on the top of my head?’ Whereas I will never say those words, that is what I’m probably subconsciously thinking and a lot of the time you’ll put your hair up and you’ll think ‘oh God that looks awful. I’ve got this massive patch on side of me head, everybody’s gonna notice.’ And that then turns into another patch, because of how you’re feeling about it. So I think your triggers are stress, worry, just being generally not feeling yourself and your alopecia itself. I think that contributes as well. 

Becky worried about hair falling out from styling it, even though she knew the causes for her alopecia areata were different.

I was told by my dermatologist, I think this was when I was doing all my tests and everything. And I was told kind of just to be careful with it, so not to blow dry it or straighten it too much or pull it back too much. And I don’t think, I don’t think any of those things contribute to it, which they don’t because it’s something that your hair’s kind of got on, well your blood cells, your hair’s got a mind of its own and it falls out where it wants, when it wants, however much of it wants. But you desperately try to stop it – so even though dyeing it, straightening it, blow drying it, pulling it back, putting clips in it, even though it might not contribute to it falling out, in your head that’s another thing that might make it fall out. So you stop doing that because you, you just desperately don’t want it to fall out. But a lot of people always say as well, because your hair falls out, “Well, why ya scraping it back? It can’t be any good for it scraping it back.” And that kinda gets ingrained in your head then, so you don’t wanna pull it too much. And I always get really scared as well that I’m gonna pull a bobble really tight and comb it to make it really flat and a load of hairs just gonna come out in a comb. That’s one of my scares. So that’s why I don’t do it as much now as well. 

Becky and her mum discussed the side effects of different treatment options, such as steroid tablets and injections.

Did your doctor give you any treatment at that stage or was it just sort of the referral to dermatology you had to wait for?

It was referral. I did wait for referral because they told me that it’s treated with steroids. But mum wanted to discuss it because of the effect that steroids have. So, because obviously when you’re younger, you just want to sort the problem out, so you’ll take anything. Whereas mum wanted to take me away and explain why she didn’t think tablets were right or why she didn’t think injections were right. So, they said to me, “It will be-, it’s typically treated with steroids,” but I didn’t have any treatment then. I came away so that when I’d made my mind up in the hospital, after my dermatology-, I knew more about the treatments. And so not straight away. But after my appointment with the dermatologist, that’s when I had my treatments. 

Becky’s mum helps by checking her scalp for changes and applying the topical steroids.

My mum’s done it for years and years and years. So when I know a lot of it’s fallen out, I’ll sit in front of her and she’ll literally like a monkey go through it all, find tiny patches, big patches and make sure that it’s all rubbed in. Cos you like massage it onto the patches, so although I can do the side of my head where I can see myself, I obviously can’t do the back. So mum will help me do the back and she’ll make sure it’s all covered, and-. But mum’s always helped me with it. And she’s always looked for and helped me with the steroids. She’s always helped me.

What about whilst you were at uni, did you have a friend that would help?

It was more a case of doing it yourself at uni. But then, like I say, I did used to come back a lot [laugh]. It’s-, I did go through a stage of trying to put it all over my scalp, not just the patches. But then I, I thought I was putting too much on. So, so long as you’re thorough with it you can do it, but for my own peace of mind I do like somebody else to help me with it. So I know for a fact I’ve got it all. 

Although women are often thought to be more body conscious, Becky thinks hair loss is hard for men too.

Obviously, I’m gonna be biased that I’m gonna be on the female side of it. But then I can imagine, for males, it to be-, I mean, it’s a horrible thing to live with anyway. But for both you’ve got different sides of it. So a female might be more bothered about her appearance, so it might get her down easier. But on the flip side of that, a male’s got short hair. So it could be a lot more noticeable. So, I can-, you can’t say which one it’s worse for because, as I say, a male’s got short hair and you could see it a lot easier and it’s easier for them to get upset about it. Whereas a female has long hair and well, typically has long hair and can cover it. But they maybe a lot more body conscious and self conscious about it. And especially media for young girls. You don’t see anybody in magazines with patches-, bald patches on their hair, you don’t. Everybody in magazines got beautiful hair and you want beautiful hair like massive curly hair or your hair up in a really-, I mean I’ve never had extensions because I’m petrified of clipping stuff in my hair. I’m petrified of putting glue in my hair. It’s not something I’ve ever done. So I can see how it is awful for both. And I don’t think you can say it’s worse for one than the other. But I can’t imagine it to be nice for males with short hair because they only need to lose a tiny bit and you can see it, with it being shorter. 

Becky finds it hard not to compare herself to her friends’ hair when they go out. She likes styling her hair but tries not to mess with it too much because she’s afraid of it falling out.

Every single one of my friends’ absolutely stunning and they’ve always got lovely hair. And it doesn’t bother you so much with your friends, but you know when you do sit somewhere, say you go out for a drink and you’ll sit in a pub and you look round and you’ll think ‘everybody’s hair in here looks absolutely stunning and mine is awful’. And that is one of the worst things, because especially-, I’m not blaming my friends but they’ve all got such nice hair and you, you feel a bit like the odd one out and you feel ‘my hair is like this because I am hiding a massive patch of hair on my head, not because I want it to be like this’. And, so, what I’ve done over-, I’ve tried to have my hair as different as I can. So, I’ve always had like a quiff at the front quite a lot. I’ve done a quiff, because that doesn’t, you can’t see anything with that. I’ve always, as I say, I put it up when I ride a lot but that’s more just in a, in a bobble at the back. When I was younger, I used to change my parting and everything to hide it and have it down a lot. But as I’ve got older, I’ve tried not to mess with my hair as much. So I’ve tried not to scrape it back. I’ve tried not to straighten it, if I can avoid it I won’t blow dry it. And I think that’s just me. I’ve only ever been told once or twice “Oh, you shouldn’t do that.” But in my head, the, the less I mess with it – the less likely it is to fall out. But then you’ve got on the other side that the less you mess with it, the more you hate your hair when you go out because it doesn’t feel as nice as everybody else’s. 

Becky works as a paralegal. Her co-workers know she has alopecia and are supportive.

I’ve been lucky in that people I’ve worked with have always been quite close to, so I worked-, before I started this new job, I worked with a really good team and at the moment I’m with a really good team. And if you’re comfortable with somebody and know them well enough, you can joke about it. It’s when you don’t know somebody well enough that it bothers you. Or if you know somebody well enough, they’ll know that I’d rather be pulled to the side and said, “Becky, just grip your hair down there because you can see it,” rather than make a big fuss of it and so, no, cos everybody I’ve worked with has always understood it and known about it and never-. But I make it a, a point that it’s not a big deal.