Annie X

Age at interview: 15

Age at diagnosis: 11

Brief Outline: Annie X first developed a bald patch in her hair when she was 11. She was prescribed a steroid ointment but prefers to use alternative therapies such as homeopathy. Annie X has struggled a great deal with the impact of alopecia on her self-esteem and confidence.

Background: Annie X is 15 years old and a secondary school student. She lives with her parents and her sister. Her ethnicity is White British.

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Annie X’s parents first noticed a bald patch in her hair on her scalp when she was 11. She was very upset and tearful, as the main association she had with going bald at that age was of cancer and chemotherapy. Annie X saw her GP who said that it was alopecia areata and prescribed a steroid ointment to put on her scalp. She was referred to a dermatologist and Annie X remembers missing school for the appointment, which suggested to her that it was quite a serious medical problem. The dermatologist said that the hair should grow back within a year and that Annie X should continue applying the steroid ointment. However, as time went on, the patch continued to get bigger and the steroids did not seem to help. Annie X wishes that the dermatologist hadn’t suggested a timeframe for her alopecia areata ending as she feels it gave her “false hope” and meant that she put her life on hold whilst waiting for the hair to return. Between the ages of 11 and 13, Annie X’s hair fell out rapidly and she developed more patches. She took to wearing a bandana to cover the hair loss and then a wig for around 3 months. Some of the pupils in other years at school thought that this was because she had cancer and Annie X experienced some name-calling. Because Annie X’s alopecia has affected different parts of her head at different times, she has had to change strategies for covering up bald patches depending on their locations. She found it both exciting to have a change in hairstyle or bandana colour but also very frightening because she didn’t want to draw attention from others.

It felt “wrong” to Annie X to be putting the steroids on her scalp and she worried that the chemicals might cause more damage. Annie X’s mum began researching alternative therapies for alopecia and Annie X has since tried laser therapy, homeopathy, health kinesiology and hypnosis. Annie X was unsure at first about some of these treatments but says that it has widened her knowledge and connections. She is willing to try treatments that are of low risk to her health and she trusts her mum to be in charge of making these decisions. Annie X’s mum also helps in other ways, such as blow-drying Annie X’s hair so that it covers any patches and allows her to keep track of any changes. Annie finds that the alternative therapies have been helpful to varying degrees. For example, she found hypnotherapy helped after an upsetting incident on the bus when two boys from another school pulled her bandana off and exposed the patches in her hair. This shook Annie X up so much that she was scared to get the bus on her own and would sometimes walk long distances to avoid it. Annie X appreciates that the alternative therapy practitioners talk with her at the appointments about how she’s feeling. She has also seen a counsellor to help with the emotional side of alopecia and the impacts on her self-esteem, such as anxiety about being in public and other people judging her.

Annie X thinks that stress and ill health triggered her alopecia initially. Prior to the first patch developing, she had been having panic attacks and was very worried about her grandfather’s health, all around the time that she was also moving in to secondary school. Annie X thinks that the combination of these things meant that stress built up and caused her immune system to turn against itself. She now tries to avoid unnecessary stress and monitor when things are becoming too much for her. She focuses on taking care of her “inner health” and does not feel the need to go back to the GP or dermatologist because she’s confident that they cannot help. She tries to maintain a healthy diet and lifestyle by staying hydrated and avoiding sugary foods. Annie X is also careful about what she puts on her scalp and hair, using non-sulphate shampoos and mineral water for the final rinse of her hair when she’s washing it.

Alopecia has a huge impact emotionally and socially for Annie X. She gave up some hobbies that she used to enjoy, such as guitar and dance lessons, because her confidence was so low. Annie X finds it especially hard to be at an all-girls secondary school where there is a lot of pressure on physical appearance and with the other pupils “always tossing their hair around”. Annie X thinks that her generation can be particularly judgemental and that this can be fueled by online social media. She thinks that the impact on her self-esteem about her appearance has also played a part in potential relationships not working out. Annie X eventually closed down her Facebook as she felt that appearance pressures meant that she was constantly comparing herself to others in photographs. Since then, she has become more interested in finding her individual style and experimenting with creative make-up. Annie X has also started private one-to-one dance lessons so that she is able to enjoy this hobby without the anxiety of performing in front of other people.

Annie X is very grateful for her family’s support, including covering the costs of treatments and the research that her mum does on alternative therapies. She sometimes feels guilty at the impacts that her alopecia has had for her parents and sister, and hopes to be more financially independent with a part-time job after her GCSEs. Over time, Annie X has become more comfortable talking to others about alopecia and she now tries to spread awareness about it. She finds that most people don’t know what alopecia is or think that it only affects middle aged men. It’s important to Annie X that people realise that it is not a trivial issue of ‘just’ losing hair but that it can affects the whole of a person’s life and how they feel about themselves.

Annie X remembers times when she could see lots of hair coming out.

Definitely, because I am really neurotic about it, so if I think, if like one piece of hair comes out I’m like, “Where did that come from?” and I sort of pull from that place, which doesn't help, so don’t pull [laughs]. But I remember when it first started it was like there was hair everywhere. There was hair in bed. There was hair in the bath. It was like you could literally scrape the bath and you’d get a massive chunk of it. I would wake up to hair all over my pillow, it would be all over my clothes. So it was really, really bad and sometimes when I think about how alopecia hasn’t been that bad, I think back to waking up and seeing it everywhere or stepping out of the shower and it being everywhere or just it being constantly around you. And when it’s constantly around you, you can’t sort of not think about it, because you’re constantly being reminded that it’s happening. And if you touch your head, it might come away. So, it’s that that was probably the hardest thing to see, because you just want it to grow back so badly, and you, but you can still feel it and see it falling out around you. 

Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.

All I remember is that it was a man and he, both my parents were there, and he said, “It will probably take-”, he said, “It’s alopecia areata which means that patch will probably take a year to sort out”, but what he didn't know was that it was going to be more than one patch and carry on. So, yeah, he kind of gave me false hope, because I remember I was like counting down the months until the year was over and then it just carried on after and after and after a while I stopped counting. Which is another thing I want to say, because I put a timeframe on it – and that was really-, that was really frustrating because I was kind of wishing the days away, but you kind of have to, what I’ve learnt now is that you can’t ever, you don’t ever know when it’s going to stop or start again. So you have to just let it, let it happen and just be patient with it and sort of don’t let it stop you, because for a while I was like, ‘I’m not going to do this, I’m not going to go out, I’m not going to go to parties, I’m not going to buy these clothes, I’m not going to wear these clothes until my hair is back’ and you can’t do that because if that happens for the rest of your life, then you are always waiting to live.

Annie X had blood samples taken shortly after being diagnosed with alopecia.

I don’t remember much about them, but I do remember I had to go to two doctor appointments. The first one was with just there was one woman in the room and my mum, and my mum basically said, “She’s losing her hair, do you know what it is?” The doctor took one look and said, “Yes, it’s alopecia. There’s nothing we can do. We can give you a prescription for steroids, but there’s nothing else we can do. We’re going to refer you to a dermatologist and we’re going to ask you to have some blood tests just in case it’s for anything else”. So then I remember my mum bursting into tears and I was just really embarrassed because she was just crying in the corner and they had to get another doctor in to say, “It’s probably nothing serious, but we are going to have her tested”. So then I had to go to another doctor’s appointment at the same doctor and they just took-, they took a lot of blood because I remember-, because I’m really bad with blood and blood tests so I was like, “Get away” [laughs]. And they, but they came back and there was nothing, there was nothing wrong in the bloods, so it was just auto-immune.

Annie X adapted her use of hairstyles, bandanas and wigs as the patches on her scalp changed location.

Each time I changed something, so I had to-, so when it was the patch on the top of my head, I pinned the front of my hair back. And then when I lost it at the back, I had to like twizzle it and put it up in a clip. But every single-, and then I went to the bandana and went to the wig and went to the bandana again. But every time, I remember, I was so nervous to go to school just because I had changed the way I looked slightly.

Annie X talks about being ill and stressed as triggers for her alopecia.

So, what my parents think it was, I was really ill at the end of Year Six. So it happened in the October of Year Seven. So in the summer of Year Six, I was really ill. And I was having panic attacks and I was having weeks off school at a time, just because I felt ill and stressed. And then, over the summer, my grandpa got cancer. But it wasn’t very serious cancer, but I didn't know that and no-one was telling me what was happening, so I thought he was going to die and I’m really, really close to my grandparents so that was an added stress. And then, also, obviously, I was moving schools to a place which was, cos I went to a mixed primary school. And I was going to a private single sex school, so it was a really, really big change. And I was really worried about it. So, yeah, I think it was stress and worry. I know for a fact it gets worse when I am more stressed. So I, that’s another thing I have to monitor. I have to monitor the amount of stress I’m under so I try and not get myself into stressful situations, like if there’s drama at school, I try and stay out of it just so I don’t put myself under unneeded stress. 

And have you found that when your alopecia has sort of changed, when different patches have appeared, can you sort of pinpoint certain events that have happened for you at that time?

Not really. Sometimes, I remember I got into a really bad argument in Year Eight and that, that triggered another patch. But I think it was just, I really don’t know, but I think it was just all that stress sort of got so, it built up and built up and built up that my body or immune system sort of twisted it to attack itself, because I was bottling up all the stress. Because I’m not, I am really not very good at talking to people. And I’ve gotten better and better over time. But I’ve, like, I couldn't ever talk to even people like my parents. So, I bottled stuff up and I think that just got twisted. And alopecia was a response to that. 

Annie X says it felt “wrong” to use topical steroids. She prefers alternative medicines and is interested in the role of diet.

The only thing that the doctor ever supplied us with were the steroids which actually made it worse. I think, because it’s just putting chemicals on your head, which can’t be good.

Could you say a bit more about how the steroids made it worse?

Well, we, because it just comes in like a bottle and you-, one of them was Regain, have you heard of that? That’s what men are supposed to use. But, it was just, it felt wrong. It felt wrong like you were putting chemicals on the hair. I think, I personally think it’s about what you put into your body, because obviously hair grows out of your body. So it’s what you put into your body. So if your body is healthy, it helps. But by putting chemicals on your scalp, that’s not helping anything, because it’s growing through and then it’s immediately being attacked by all these harmful, unnatural substances. So by taking herbs and supplements that aren’t medicated, they’re just increase things. Like one of them, I know, increases my absorption level so I could absorb more water. And I know one of them increases my immune system, because it’s an autoimmune condition. So, I’ve had to be careful about my diet, like I can’t eat too much sugar and that’s not like ridiculous, like I am allowed to eat chocolate and stuff. But I sometimes have dark chocolate instead of milk chocolate, just to limit the amount of sugar I’m putting in. And then, I also make sure I eat a balanced diet and lots of protein because protein grows hair. So I am conscious of what I’m eating and you do have to monitor what you put in your body. 

Annie X says health kinesiology is the “weirdest” alternative therapy she’s tried, but that “it does help a lot”.

Health kinesiology is really weird. So basically, I go into the room and I lie on a bed and I have to put my arm up and it’s all about reflexes. So it’s like, ‘yes’ [moves arm], ‘no’ [moves arm], and then she asks me a series of questions and it’s all about energy balances and releasing emotion. And she like waves bottles over my, over me and tuning forks and all sorts of stuff. But, it has – out of all the treatments – worked the best just because we saw an actual improvement after three years of not really seeing anything. We’ve seen an actual improvement of my hair growing back and then not falling out again, touch wood. So that’s probably been the one, although it’s the weirdest one, it’s helped the most. 

How often do you go to see the health kinesiologist?

Yeah. I go to see her, I used to go see her every four or five months. But recently, she’s felt like she doesn't need to do as much work. But she can also treat me remotely, which is really weird. But it’s all about energy so she can do it remotely. But it’s kind of like she says, “If your body says you need to come visit me, come visit me”. So, it’s weird. But there is like this thing that sometimes crops up in my mind, like this thought that just repeats itself that’s like, ‘you need to go see her’. So then, my mum does make an appointment straight away and we go see her. But yeah, she just, she says it’s all about releasing trapped emotions, which makes sense, because I build, have been building up emotion which they thought triggered it falling out. It still kind of feels like she’s some kind of like a witch type thing. But it does help a lot. 

Annie X describes her experiences of homeopathy.

Homeopathy, I went to one woman and that didn't really help that much. And then I went to, and then [name] has helped and just given me drops which is quite easy, because I haven't got to take like six pills. I can just drop it in some water and drink it. And I think that does help. I don’t think I would feel comfortable not getting rid of, not taking it just because when I was little I had really, really bad eczema like all over my body. And when I went to a homeopath, that just, that just cleared up completely. So I think it does help.

What was it like when you first went to the homeopath?

It was really hard, because I didn't really know what was happening. She was asking me all these questions like, “How do you feel? How do you feel? Do you know anything that could have triggered it?” And I just didn't, so she was trying to get it out of me and sometimes it felt like the sessions weren’t really helping, because she was just giving me the same stuff over and over again. But then, when I went to [name], he sort of knew exactly what, because he treats other people with alopecia. So he sort of knew exactly what I needed and then if I said, “Oh, my scalp is feeling sore,” or, “Oh, my eczema is playing up again”. He’d just put something slightly different in the drops and it would sort itself out within a couple of days. So, yeah, homeopathy definitely helps.

Annie X feels very self-conscious. She describes a time when schoolboys pulled off her bandana and she was afraid of going out on her own.

I sort of went into a shell and I remember when I did go out, I had sort of hide, sort of hide behind my parents, hide in shops, not really want to do anything. I always had to get the bus every day, which isn’t the big a deal. But when you feel like everyone is looking at you because you are weird, it’s especially hard. And I remember I was on the bus once and these two boys from another school came up to me and they pulled my bandana off. That was really, really difficult because then all these strange people on the bus have seen like my hair with missing patches and stuff. And so after that I was really scared to get the bus by myself. So I remember some days I would walk home if other people weren’t getting the bus and that’s a good 40 minute walk just to avoid the bus. And I am still scared of doing stuff by myself, I’m getting better though. But I still can’t walk from one end of [city] to the other without pretending to be on my phone, just in case people are looking at me, because I have this-, I’ve got it in my head that everyone’s always looking at me just because they did. And they can, they have the right to look, because normal 15 year olds don’t wear bandanas or don’t have hair that looks like a mushroom. But so I’ve got it in my head that people are always looking at me, which didn't help my self-consciousness at all. But, but I remember I used to sort of breakdown essentially. I used to have many breakdowns where I would just be like ‘I can’t be good at anything. I can’t build on from who I am until I am perfect as I am’. So I would be like, I can’t try and do this as a career and I had to quit dance and I had to quit guitar just because I didn't think I’d ever been good at anything again. And so people don’t really think it’s that a big a deal losing your hair, but the emotional side of it is, is really difficult.

Having alopecia really knocked Annie X’s confidence and the thought of performing stopped her from doing dance, which she loved.

And then I had to quit dance. I used to really, really, really love dance. I used to do it for five hours on a Saturday morning, which was three classes. And I had to quit just because I didn't feel confident any more and obviously when you’re dancing you have to be confident in yourself and like portray yourself as being confident. But because I was like really sort of in myself, I couldn't do that any more. I just, I stopped enjoying it so I quit that. Which, obviously now, I am really annoyed about, but then I couldn't think of any other option. But I started dance up again now but I still do it with private lessons, so one-to-one, because I still can’t perform in front of people. And then I quit guitar just because I felt like I could never perform, so I would never play in front of people just because I didn't think I was good enough. And obviously if you’re playing an instrument, people are watching you play the instrument. So, yeah. It’s been a bit of a shame, because I enjoyed both of them a lot. But yeah, I didn't really feel that there was another option. 

Annie X's mum has done a lot to help her. But Annie X doesn't want to "load stuff onto" her parents and says her mum gets really stressed about not being able to fix things.

The people who have supported me the most are probably my parents. I was going to say my friends, but that’s not fair because my mum has put so much into researching and getting-, finding alternative researches and taking me to appointments and paying for treatments. 

My parents are there to talk to - I just don’t really like talking to them, because I feel like it’s not their fault it’s happening. So I shouldn’t really load stuff onto them, because my mum gets really stressed and she has this thing where she feels she has to fix everything. If she can’t fix something, it just sort of like controls her sort of mind. But I know that’s been really hard for her, because she’s had to go see a psychologist, just because she can’t like order something from Amazon or click her finger or have an operation and it will be sorted. You have to sort of wait for it to take its course.

Annie X says it can be difficult telling people about her alopecia, but that they “don’t really mind” once they understand what alopecia is.

I remember telling people, a lot of the time I tell people I’ve got alopecia and they’re like, “What?” And then I have to explain to them it all and I’m just like, “Look it up”. That’s the scariest thing. It’s like, this is what I am going through and people don’t understand what it is, because they’ve never heard of it. Because when you say, “Alopecia areata”, it’s like, “Can you speak in English please?” And so, it’s, it was really difficult to begin with and it was especially difficult to get across. Because I don’t really like people feeling sorry for me. So when I was wearing the bandana and people thought I had cancer and like were giving me sympathetic looks and I’m like, “No, I’m fine. It’s this-”, but then no-one knows what it is, so I’ve explained, it was one of the things that I tell people when I first met them, because obviously it’s a big part of me. And I was always scared they’d leave, because I’m in some way weird. But once they understand what it is and what the reasons are, they don’t really mind. So, I think it is hard to begin with to, for people to get the concept, because the only time they may have heard of it is with male balding when you get older. So it’s like, “You’re 15, why?” So, yeah, but no-one had a clue about it, which was interesting.

Annie X was given the nickname ‘grannie’ because she wore a bandana and felt very self-conscious about people commenting on her hair at school.

I used to get excited about little things like because I had to wear a plain brown or plain blue bandana at school, because that was the uniform. But I used to get excited when it was like ‘mufti days’, which are non-uniform days, because I got to wear coloured ones. And that would just be something for me, because I would be like, this is a change. Then other people would be like, “Why is she wearing a coloured one? That’s weird”. And I remember when I first took my bandana off I remember hearing people whisper about sort of how weird my hair looked and like someone said, someone said I looked weird, but I heard them. And also I remember, my nickname is, Annie – and I remember when it first started this girl in the class came up to me and she was like, “You know you have a bald patch on your head, don’t you?” and I was like, “Yeah”. She was like, “That’s like a grandma”. And then I came in the next day and in front of my name on my locker was, ‘G R’ so it’s spelt ‘Grannie’, which was just, so I sort of walked into school because it was literally two days after my mum had found the bald patch. I was really, really, really self-conscious of it and more self-conscious than I’ve ever been about it. Just to come in and see that was just horrible. So, people don’t really, because obviously it was just a joke, but people don’t understand how much it affects you when you are that vulnerable to other peoples’ opinions. 

Annie X says alternative treatments, hair products and wigs have cost her parents a lot of money. She is very grateful for their support.

I don’t know how much exactly my parents have spent on it, but a lot, because the treatments are for the lasering are around £45. Health kinesiology is £45-ish, again. The wig was £300. The amount of Couvre [scalp concealing lotion] we’ve bought is a lot. There’s just so much stuff and that’s probably the thing that I hate most about it is just because I feel like I’m costing my parents both mentally, physically and financially which I hate doing. And I’ve asked them not to, but it’s like my mum can’t not do anything about it. But yeah, cos people who don’t, who don’t, aren’t as lucky as me or aren’t as privileged as I am and don’t have that money to spare on treatment, it will, it could be a lot harder. So I’m really lucky that I’ve been surrounded by like, I’m in an environment where my mum can just say, “That’s fine. We’ll just spend another £150 on it” or, “”That’s fine, we’ll just spend another £300 on it”. So I really do owe my parents for all the help they’ve given me, because I couldn't do half, I wouldn't be having half the treatments I had if they didn't. 

Annie X closed down her Facebook account because she was comparing herself to others which made her feel anxious and upset. Now she only uses Twitter.

So, like I don’t have Facebook, I don’t have anything like that. I literally only have Twitter, because that’s only one picture. But I know that because there’s so many people in the world and if they’re all posting pictures and you’re going through all their pictures looking at who is prettier than you, that just doesn't help, but that really didn't help me. Cos I had Facebook for a bit and that really didn't help me. I was like obsessed with looking different and yeah, it doesn't help at all. 

So did you make a decision to close down your Facebook after a while?

Yeah, I decided to close it down just because a) I wasn’t really using it other than to [laughs] stalk at people and look at their photos just like cos I wanted to be like them. But then it also upset me because I couldn't be like them for obvious reasons like I couldn't dye my hair blonde or I couldn’t dye my hair black or I couldn't curl my hair or I couldn't straighten my hair. And I remember everyone went through a phase of having like really skinny eyebrows, being really tanned and having really straight hair. And it’s like I can’t be part of that because my hair wasn’t there. I was pale, because I am incompetent with stuff like fake tan [laughs] and I didn't want to, and like I don’t have thin eyebrows. So, it, I just, I wanted to stop so I wasn’t comparing myself to people because it was just upsetting me.