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Alopecia (young people)

Family life and alopecia

Relationships with family members were often important for young people with alopecia. Many said their families were there to offer comfort and support in dealing with the emotional side of having alopecia. Elizabeth says, “There have been times when I would cry over it and my mum’s just been there to hold me”. A few people said they found it hard to be around family when they were upset or worried about alopecia. Krista thinks she pushed away her partner, but sometimes talked more to her dad and step-mum.
 

Annie Y’s parents treated her alopecia as “not a problem”, so she has never really seen it as a problem either.

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Age at interview: 23
Sex: Female
Age at diagnosis: 3
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I think my parent’s attitude towards it was like they treated it like not a problem, so I didn’t get any sympathy, and then, not like in a mean way [laughs], but so then I never really viewed it as this big problem, and so then nobody else really does in my life either, it's not really something I talk about very often, or that I ever needed to like get therapy or like. I never really get-, this is like the, a whole, the first time I've ever really talked about properly with anybody cos I've never really needed to. So, I've never really had any like really big problems growing up I don’t think, which is obviously I know people do but-, so I must just be quite lucky I think.

Mm mm. So you think it's partly to do with like your attitude towards it as well, and your family's attitude that-?

Yeah, maybe. But I also think-, yeah I think like something's only a problem if you make it a problem. And I've got-, I've just got really good friends and I think maybe they’ve just been-, I guess people would have asked them about it. I don’t really know. Like I've just never, nobody's ever sort of like directly asked me like, "Can you tell me about your hair?" People just aren't like that, I don’t think, and just out of respect that that just wouldn’t be the kind of thing to do and would let me tell them. And most of the time, like nobody even realises; like I know that most of my friends in [city name] have absolutely no idea, which is just funny, like that I can live with my two housemates who I'm such good friends with, and they have no idea. Like it is kind of funny. I am lucky in that I like, like the wigs I wear are like real hair so it is quite similar so people wouldn’t really notice, so I think that makes it a lot easier as well. So I don’t have to talk about it sort of.
 

The best support for Meghan is when other people, including her family, behave ‘naturally’ around her.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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If there’s something that’s bothering me about it or if I said I’m getting ready for a night out with like my friends, they’ll just like oh let me just fix that bit of hair or something small. It’s nothing like it’s there’s no like a major like sit down cry or anything like that. At the beginning obviously there was and my, occasionally me and my mum do. But it’s more just like it’s just something like say if you had like a bit of dirt on your face they’d be like just get rid of it, it’s just something like as natural as that now, which is what definitely helps. Something that’s not like forced or should I tell her that, that her bald patch is out or something like that. It’s just like something as simple as day to day life and that’s I think is the biggest support you could have is just natural now, ‘cos it like at the moment it feels like I’m going to have it forever, like I’ve had it for half of my life so if for me it feels natural and then when people around me and it feels natural for them it makes me feel a lot more secure and like normal about it. 
 
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For Ben, even though everyone in his family was supportive, it was his mother who was most ‘emotionally involved’ and the best person to talk to.

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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My mum was always kinda the primary person I used to worr-, I used to talk to about it with I think. Cos I felt like it’s quite pers-, it was quite personal to talk about it because it sort of makes you feel quite vulnerable. So as your mum was probably the best person’s to talk to for me. And she always used to help me, you know, like cover my hair- cover the bald spots on my hair and you know, take me to the doctor’s and things like that. But she was there when I shaved my head for example. She was- I think she was the most-, as emot-, she was obviously as emotionally involved as me, if not more. She was- she was more upset than me when I had to shave my head, if that makes sense. Not because it was losing my hair but because she knew it was, you know, it was hard for me. But everyone else in my family completely great. Like I went-, I was a bit nervous about my first family gathering after that because obviously I looked a bit different. No one bat-, it didn’t, it seemed the same as it was before and that really meant a lot to me. You know, I wasn’t treated any differently but there shouldn’t be but, you know, I was-, it was just really nice.
Many people talked about their parents and guardians, but siblings were often an important source of support too. Kayla’s younger brother used to make comments when she changed her wig, but he’s more aware that it’s a sensitive issue now he’s older. Megan’s siblings are a lot older than her and her sister in particular has always given lots of support.
 

Emilie’s brother wrote in to a TV programme when she had been cross about an interview they had shown with someone with alopecia.

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Age at interview: 18
Sex: Female
Age at diagnosis: 4
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When I have occasionally read, you know, articles and things about people who are going through alopecia and they say, “Oh you know, I’ve suffered so long with this illness,” and I’m sat there going [head in hand] ‘k then, no’ it’s very frustrating, it’s very frustrating when I hear someone say it’s an illness, it does get me very angry. I remember watching TV one day with my brother when we were quite a lot younger and it was something my mum had put on and it was a talk show and someone was getting interviewed because they’d lost a tiny patch of hair and because of that they were wearing wigs and first of all I was ‘that’s ridiculous,’ you know, I was saying, “You don’t need to wear a wig, it’s only a tiny patch of hair,” but then my brother went through all the lengths of finding the website and sending them a very-, you know, strongly worded e-mail saying, “This is ridiculous. First of all, it’s not an illness. And my sister has gone through this for so many years and she never wears wigs,” and I thought that was really sweet of him. 
Family were often very involved at the early stages of having alopecia. Sometimes family members, particularly their mums, went with young people to see the doctor and discuss treatment options. Family members sometimes helped with applying treatments and managing the visible appearance of hair loss (e.g. hair-styling or helping them get their first wig). Annie X’s mum did lots of research about alopecia and paid for alternative therapies like homeopathy and hypnotherapy. Elizabeth’s sister is training to be a hairdresser and offered for Elizabeth to try out a new salon therapy.
 
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Kayla’s aunt is a hairdresser who helped her to style her hair and created hair patches from extensions to cover areas of hair loss.

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Age at interview: 20
Sex: Female
Age at diagnosis: 4
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Then, I guess, going into my teenage years, I started losing more and more. But I have an auntie that’s a hairdresser, which was pretty convenient, and yeah, so as my hair started getting less and less, she started doing like crazy schemes. So like, at one point, we were-, well, to begin with, I just started back combing and like hair spraying like so my morning routine was like two hours [laughs]. And then she started like ordering like, oh can’t remember how she did it, I think she ordered extensions and then like made of these patches that I would stick onto my head, so I guess like hair pieces but to fit the bald patches and then I would just like kind of hair spray over. 

I grew up with my auntie and uncle so because she was a hairdresser, she was pretty helpful in everything that, if I needed like a haircut or stuff, I could just go to her salon after school, so it was kind of like that little bit extra less pressure ‘cos I guess, if you’re a kid without a hairdresser in the family, you’d have to go to a hairdresser and like then it feels like a-, I guess a bit real, when you have to actually-, so it was quite cool having that. And I think that as well kind of made people suspect less like when I had significant hair changes and stuff, I just had a hairdresser, so it just felt like changing my hair I guess. So but, she was pretty-, we’re pretty open about it. It wasn’t like a touchy subject. 
 

Michael’s mum supported him emotionally and arranged for him to see a counsellor.

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Age at interview: 19
Sex: Male
Age at diagnosis: 13
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I'd say my mum is the heaviest involvement in my life in general, as well as alopecia. It was difficult for her to begin with, because she had to deal with me being upset, and she had to maintain her like calmness, to make sure that I wasn't getting stressed out as well. But she's been helpful throughout it, and helped me with different treatments and stuff like that. And attempted to find, like- done like- she done all sorts to try and help me become more comfortable with it. She at one point when my self-confidence was especially bad, she took me to a counsellor, to try and improve myself. And I went for a few weeks, and became a lot calmer. And then I felt I didn't need to go to that any more. And since, I've been quite calm.
 
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Laurel talks about the ways her family show her support.

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Age at interview: 17
Sex: Female
Age at diagnosis: 15
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My dad as I say he shaved his head. He visually supported it and it has-. It’s really affected mum and dad. And it sounds really weird but I think they were really upset about it. And I know that they all they just wanted to take it away. They always tell me that if they could. Like mum, “I’d rather be bald than you be bald.” I think my sister feels a bit left out [laughs]. That sounds really weird but she’s got really long, long, long hair and everybody kind of focused on me and like how upset and stuff it got me and nobody was really giving her attention. But she shaved part of her head as well and that was really good too. She’s really supportive. Everybody’s really supportive. Yeah, I can’t-, I can’t fault anybody actually. They’re all great but now that it’s kind of out there, they just come up and like slap my head and stuff [laugh].

Oh

Just can’t help it [laugh]. And my wee, my wee cousin who didn’t understand it but what was cute the other day was we were all lying on the couch and they were just sitting, stroking my head, like stroking my hair. 

Awr [laughs]

And she’s only, she’s only four so she was, she was feeling it and even like they get it. Sometimes they tell me to put my hair back on and I’ve got crazy hair and stuff but it’s all fine now. Like I can take it as a joke and that everybody’s supportive and that’s basically all I want to say. They’re just really supportive. 
Family members responded in a variety of ways to the young person’s alopecia. Some family members avoided talking about it, especially when it was first diagnosed. Imogen feels much of the family on her dad’s side “don’t even acknowledge” her alopecia, but says her mum and nan are “really supportive” and have “been my backbone throughout this”. Others were surprised and sometimes concerned at their family’s emotional responses. Michael thinks alopecia can “put a strain on not only the person, but the whole family”. Annie X remembers feeling embarrassed with her mum “bursting into tears” when the doctor said it was alopecia and they had to bring out another doctor to reassure her. Laurel recalls her mum crying as she shaved off part of Laurel’s hair, which “made it worse” for her. Arti didn’t feel she could talk to her family about how she was feeling and she found seeing a counsellor was helpful. 

Some young people with alopecia found themselves comforting or supporting other family members. Hannah said, “A child can be more resilient than the adults and the adult might actually need the support”. Rosie remembers that her mother was very upset about her hair falling out at first but changed when she saw that Rosie wasn’t upset and now they “joke about it quite a lot”. Kayla’s dad lived abroad and was “a bit awkward about it”, but she thinks it’s difficult for fathers to know how to talk about “their girl’s hair”. Ben feels it was hard for his parents because they “couldn’t do anything to stop it” when his alopecia was making him unhappy.
 

When Krista had alopecia, she was really worried about the impact on her young daughter and step-daughter.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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Yeah I don’t, I felt embarrassed, I felt it was, I felt embarrassed for [daughter’s name] if that makes sense. Cos I thought well what I used to picture in my head was me having no hair and when she goes to, I imagined her when she went to school and I thought well kids can be nasty and I thought well what if sort of one of the other mums said to their children ‘Oh [daughter’s name]’s mum wore a wig’ [hmm] and I’ve worked, I did child care at college so I did sort of placements in schools and nurseries and kids can be nasty and things that they say. And I kept thinking to myself what if she gets bullied cos her mum wears a wig and it’s all my fault. and it, it’s even little things to, like when I get her out of the car and she’d pull on my hair and I think well what if she pulls my wig off and people laugh at me [mic noise] and for me it was easier to just stay in the house with her. And I said before that I was scared that she wouldn’t recognise me but she never, it never fazed her. And [partner’s name]’s got a four year old daughter from a previous relationship and even she never mentioned it, she never asked, she never asked where my hair was she never said anything like that but she’d see me put my wig on and she’d asked sort of “Why did you put your hair on as a hat” sort of thing. And I do remember one day going to Morrison’s with [partner’s name]’s daughter went and did some food shopping and we were in the middle of a really busy aisle and luckily my hair had started growing back at this point so it didn’t bother me so much. And in the middle of a really busy aisle she decided to shout out one day “Can I take my hair off like you do?” So that was [laughs] that was a bit, I mean people turned round and looked at me but I just laughed and I just said to her, I just said “My hair, my hair got poorly and hopefully it should never ever happen to your hair so no you should never ever have to take your hair off like I do.” So I’d say that that was probably, it wasn’t very nice explaining that to a four year old cos she doesn’t understand, she hasn’t got a clue. And after that I think she relaxed then cos if my wig wasn’t on, she’d disappear upstairs and she knew where I kept it and she’d come walking downstairs with my wig on [laughs] So it was, I was very surprised that she didn’t pick up on it and she didn’t ask questions, I mean I have quite a good relationship with her mum and I don’t think she ever questioned it, I don’t know whether she did and her mum didn’t tell me but I don’t, to be honest I don’t think she ever questioned where my hair was until I, until she noticed I started taking my wig off and then she questioned it. So for a four year old to see me with a bald head I was surprised she never said anything and I was surprised [daughter’s name] never. The only time [daughter’s name] ever looked at me strange was when I had my hair cut when I took my wig off. And when, she was here at the time and I came back and I walked in and she just sort of, it was my voice that she recognised but she didn’t recognise me cos I’d gone from having the wig, the long hair to this style now but then she soon got used to that she got used to it quicker than I have [laughs].
 
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Hannah compares her mum and dad’s very different approaches to her alopecia and ways of giving support.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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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.
 
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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.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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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.
A few people said that a stressful time at home, like the death of a grandparent, might have been a trigger for their alopecia. Quite a few people thought their alopecia might be “in the genes” and Hannah wondered if her own children might have it. Rochelle and Beth both had aunts who had alopecia. Emily thinks having a family history of other autoimmune conditions made her “quite aware” about the genetic background of alopecia areata.

Over time, many people felt their alopecia became a normal part of their family and home lives. Although it could still be upsetting at times, some people found humour shared with their family was a good way to manage the emotional side of alopecia.
 

Emilie’s boyfriend’s dad also has alopecia and she talks about how he makes her laugh about it.

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Age at interview: 18
Sex: Female
Age at diagnosis: 4
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Most of the time we take a lot of jokes we, we just, because when we’re out in public they seem to think that we’re father and daughter because of how we look. And he made this comment which forever makes me laugh where there’s a lot of kids in a café that were looking at us and he made a reference to a movie where there’s these aliens had come down and, can I mention the movie, is that okay?

Yeah, yeah, sure.

Coneheads? It’s an 80’s movie. Basically they’ve all got really, really big cone bald heads he constantly refers to that film and, for jokes, and he said, “Emilie, on the count of three, turn to them and stare”. So we just sat upright and just, you know, [turns head to the side and stares] just joking around, cos some kids just laugh about it and these kids were like [gasp] “Oh, oh”.

[Laughs] 

So [laughs] yeah, it is a connection that I haven’t been able to have with quite a lot of people and he’s actually the first person that I’ve spent a lot of time with that’s actually got it. when I was younger we’d meet people who had alopecia, who’ve had alopecia but not necessarily still do, and a lot of them are much older than me so I still felt very alone and it was lovely the fact my mum and dad did this for me, you know I felt really appreciated and I appreciated what they were doing. But at the same time because there was no-one around here that I knew had it I did feel very isolated for a long time and it took a while for me to get out of that isolation and, you know, take my hood down and start actually making friends and doing things that bring up my confidence.
 
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Krista thinks it’s important to try and find “some funny sides” to living with alopecia.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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There was some funny sides to it, some bits that made me laugh. One day I rang my dad, this was before I had the wig and I was just, I just broke down on the phone to him and I asked him to come round and he came round and we were sitting on the sofa and he said “You’ve still got hair it’s not that bad” and ran his fingers through my hair and just a big clump of hair fell out and he was just like ‘Oh gosh’ and just threw it behind the sofa, so I mean some bits sometimes you had to laugh cos otherwise you’d just sit there crying all day. 
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