Elizabeth

Age at interview: 20

Brief Outline:

Elizabeth first had a bald patch at age 2. She has had some hair loss constantly since she was 10. She has tried many steroid creams but hasn’t found these helpful. Elizabeth says she continues to struggle with the impact of alopecia on her appearance.

Background:

Elizabeth is 20 years old and an intern in youth work. Her ethnicity is White English.

More about me...

Elizabeth has alopecia areata on her scalp. She developed bald patches at age 2 and 7, both of which took about a year and a half to regrow. She has had hair loss to some extent constantly since age 10, usually on the left-hand side of her scalp. Elizabeth has been told by her doctors that her alopecia is caused by stress. She disagrees and doesn’t see how her stress levels could have been so high for all this time without damaging her physical health in other ways. Elizabeth says that she didn’t know much about alopecia at the start and that her doctors didn’t give much information. She started to understand more from the age of 10 onwards with the help of her mum and biology lessons at school. Elizabeth is unsure about getting a wig because she says she copes as it is at the moment. It would also be a huge expense since she doesn’t think she’s eligible for these on the NHS. She likes having her hair curled but tends not to do this anymore, or put her hair up in a ponytail, because the patches are more visible to others.

Elizabeth saw a doctor about her alopecia for the first time when she was 7. Her GP prescribed her a steroid cream to rub into the bald patches. She didn’t like that the cream would get in her hair and doing the treatment meant that she didn’t “feel normal”. Her hair regrew after about a year and a half, but Elizabeth thinks this was a coincidence rather than a result of the steroid cream. Since then, Elizabeth has been offered more steroid creams of different strengths for her alopecia from both her GP and the dermatologists at the hospital. Elizabeth doesn’t think that these are effective though and says that she has “ended up just giving up with doctors”. Elizabeth once tried some vitamin tablets that her nan bought from a health foods shop, but says these tasted “vile”. She also used a special shampoo and conditioner which was recommended by a friend and, although it tingled, it was very expensive and didn’t seem to help. She has recently been offered a free trial of a device aiming to electrically stimulate hair growth at a local hairdressers. 

Elizabeth has struggled with her appearance a great deal. She was bullied when the bald patches on her head became visible at secondary school. Elizabeth says she used to be an outgoing and confident child but that she grew very quiet at school. Elizabeth remembers getting into trouble at home and, towards the end of secondary school, walked out of some lessons, was in some fights and started smoking. She thinks that this is because she had a lot of anger built up. At age 18, she attended a treatment programme for young people struggling with issues such as depression, anxiety, eating problems and self-harm. Elizabeth says it was intense and really tough being away from home, but that it helped boost her confidence a great deal. Elizabeth currently works with young people and says that she’s sometimes nervous about how they might react to her alopecia. She says that she would rather be asked about it than for someone to talk behind her back though. Elizabeth says there are still occasions when her hair loss gets her down.

Elizabeth says that her family, especially her mum, are very supportive and that her experiences of tough times have also strengthened her friendships. She thinks that having alopecia has affected potential romantic relationships, though she’s not too worried at this point in her life. Music is important to Elizabeth as she says it helps build confidence and express feelings. She has looked online for information about alopecia and finds it helpful to chat with others with similar experiences. She struggled to find resources specifically for her age group and feels that the impact of alopecia on young people is often underestimated. She would like for schools to be more aware of alopecia-related bullying and to offer support, such as by providing someone to talk to. Elizabeth encourages healthcare professionals to recognise that alopecia can affect people’s lives in many ways, including “the invisible stuff” such as psychological and emotional impacts.

Elizabeth didn't tie up her hair when she played football because she didn't like others seeing the bald patches.

I used to do football, I haven’t played it in four years and I miss it so much just because it wasn’t practical. I made the decision when I was 16 that I was gonna stop playing football because of church because of football games moving to a Sunday morning because when you’re 16 you go from girls to ladies. And but I would never put my hair up for a football game which meant that my hair got in the way, it got in my face in football but it was just I was so uncomfortable with it even though the majority of the girls in my football team, at least half of them I’d grown up with so knew about my alopecia but I was like ‘I’m not-, I’m not doing it’ because actually there’s parents, there’s the opposite team, there’s half of the other team, no – half of my team even that don’t know and so I didn’t do it. Like now if I got to the gym I’ll quite happily put my hair up and like it’s me, I don’t really- I don’t really care anymore. Like this time last year my alopecia wasn’t visible unless I put my hair up and yet I still was like ‘you know what, I like putting my hair up – I’m gonna do it’ but now I wouldn’t put my hair up unless I was going somewhere like the gym.

Biology classes at school and talking to her mum helped Elizabeth understand more about the blood tests she had.

I’ve always had a real interest in human biology and so that’s really helped my understanding because if you’re interested in something, you’re gonna know more about it so I’ve kind of always-, so it’s helped my understanding of alopecia as I’ve got older. But when I was seven I knew it was happening to me.

How did you sort of go about learning about alopecia when you were about ten onwards?

I don’t know, I think at the age of ten you kind of start to figure out that you’ve got an immune system and what it actually is and like I’m really lucky cos my mum’s a healthcare professional so my mum kind of explained some stuff to me about it. But it was more me just, I had a blood tests when I was ten and when that came back-, I never got the results for it but I remember when I was-, I remember them going, “It’s just your immune system, it’s-, it’s your, it’s your immune system,” and there being no more to that. And then when I was 15, I remember doing homework on the immune system and me going, “Mum, so-” and kind of going, “With the blood test, were they testing my white blood cells?” and because actually that’s the only way they would have known it was my immune system. And my mum’s like, “Yeah,” and I was like, “Well, why didn’t they ever tell me that?” Like they didn’t seem to give me-, like the hospital didn’t seem to give me a lot of information. And then I started A-level Biology and then we had a discussion on cells and the fact that there’s part of your cell, which I cannot remember what it’s called, that basically let’s your immune system know that the part of the body so don’t attack it and in autoimmune diseases it kind of goes-, people don’t know why but that part of the cell goes and that’s why the immune system attacks it.

Elizabeth says it can be difficult to explain to people, especially children, about alopecia.

More with young children, so I work with really any age but I remember a couple of weeks ago a young girl-, a young girl asked me, “Why-” like, “Why do you have no hair?” and I was like, “I have-, it’s because I’m poorly,” like that’s-, “But don’t worry,” because and I kind of had to say, “But it’s not-, it’s not a normal-, it’s not like a cold – it’s not something you can catch, so don’t worry.” And like having to explain it to like a 7 year old, 6, 7 year old is really hard without them thinking ‘I’m gonna get this’. Like so it-, whereas with-, yeah, I [sigh] people have asked and I’ve kind of-, I’ve just quite openly said, “If people want to talk to me about it then I’m-, I’d rather someone talked to me, talked to my face than speak, speak, talk about me behind my back.”

It was frustrating when a hairdresser kept assuming Elizabeth’s hair loss was due to her wearing extensions.

I remember going to a hairdressing salon like college salon so they were trainee hairdressers and it was probably the worst experience that I had with hairdressers. And basically I was having my hair cut by someone who was learning hairdressing. And then their tutor came up and was like, “Do you have alopecia?” “Yes,” and then I said, “Yeah, oh, I’ve had it since I was two.” But then they asked silly questions like, “Arr, have you had extensions?” “I just told you I’ve had it since I was two,” and but I was just like, “No.” And then I said to my sister like once I’d left, “Why did she ask me all those questions?” cos I think I was about 12 at the time and I wasn’t necessarily a girly girl so I didn’t really care about extensions or anything. And she was like, “Because extensions can make your hair fall out,” and I was like, “I told her that I’d had it since I was two, it’s not gonna-.”

Elizabeth talks about a shampoo, conditioner and leave-in foam she used.

I tried Nioxin which is a certain type of shampoo and conditioner and then this foam stuff you put in your hair and wash that out as well and it’s supposed to stimulate growth. It didn’t work for me but then it has worked for others. It got recommended to me by a friends who’s a hairdresser.

So when would you have tried that shampoo and foam treatment?

A year and a half ago now I think, so quite a while ago. And it tingled at the time but it didn’t actually help in any way.

I stopped using the shampoo cos it didn’t work for me. It was something that GP’s were only starting to kind of prescribe for people but I didn’t get it on prescription so I’m not using any treatments at the moment cos, yeah, like I said I’ve kind of given up with-.

Elizabeth talks about a time when she faced bullying in school. She became more confident as she grew older, but then found herself becoming self-conscious again as she moved into secondary school.

Bullying definitely was related to it when it became visible. I remember once in a History class as people were lining up to go outside and I was just finishing my piece of work, one of the boys in my class actually coloured in one of my bald patches. Yeah [laugh]. it’s just like name calling what kids do really, but confidence wise – I think my confidence is a lot better than it was, this time last year it was a lot better than it is now though. But when I was ten I was extremely confident, extremely outgoing and then partly because of alopecia, partly because of what secondary school does, by the end of Year 7 I was a completely different person – my confidence-, I was-, at school I was one of the quietist kids there, outside of school I was a completely different person, I was loud, I was outgoing, I got into trouble – but in school I was [gestures quote marks] ‘the perfect pupil’.

Why did you think that happened around that age?

I don’t know. I think it was, there was a lot of new people, a lot of people that hadn’t grown up with me having episodes-, well they knew about it when-, I think some of my friends knew about it when I was seven and only about it-, and only a small group of friends knew about it when I was ten and I think it was it became visible when I moved up to secondary. So I became more self-conscious because I was, I was going into the awkward years [laugh] and school kids are mean.