Ben

Age at interview: 18

Age at diagnosis: 14

Brief Outline:

Ben has alopecia universalis which began as a bald patch at age 14. Ben enjoys some of the attention he receives and says that he is more confident now than when he had hair. He is involved in supporting others with alopecia through social media.

Background:

Ben is 18 years old and an undergraduate university student. His ethnicity is White English.

More about me...

Ben has alopecia universalis which began as a bald patch when he was age 14. He wasn’t too concerned at first and the hair regrew a few months later. Ben became more worried when he was 16 as another patch developed and continued to get bigger. He styled his hair to cover it but this became harder when two new patches developed during sixth form. He felt very self-conscious, especially as this was a time when he was becoming more interested in romantic relationships. Ben used to wear a hat and had a special tinted hair spray to cover the patches, though he had to be careful as the colour would sometimes come off on furniture. Ben eventually decided to have his head shaved and found this really “liberating” because he “took control of it rather than it controlling me”. Some stubble grew back on Ben’s scalp but also fell out over the following months. It was during this time that Ben lost all his body hair. Losing his eyebrows and eyelashes was especially hard and Ben feels it makes him stand out more. Ben thinks that his alopecia was triggered by suppressed feelings after the loss of his nan. 

Ben visited his GP a number of times. He had tests done which showed he was in good general health and so the doctors put his alopecia down to stress. At the age of 17, Ben was referred to see a dermatologist. He had an allergy test which showed that he was intolerant to gluten. He hoped that cutting this out might help his alopecia but his hair loss continued. Ben didn’t like that the doctors couldn’t give any certain answers about his hair loss. It was really hard to feel so out of control and like he was “gradually being worn away” by alopecia. His dermatologist prescribed some steroid creams but Ben found they were sticky and would clump together his hair. Ben was also offered steroid injections but declined as he was worried about scarring on his scalp. Ben’s parents arranged for him to see a trichologist (hair specialist) who gave a treatment of alternating topical solutions to put on his scalp. Ben doesn’t have much confidence in treatments for alopecia and using medications made him feel like there was something wrong with him. He also felt like it was a return to being younger, as he needed reminders and practical help from his mum with using some of the ointments.

Ben finds that many people he meets are interested in his alopecia and he enjoys some of this attention. He says that humour is a key way that he deals with having alopecia and it’s important to defining the boundaries of his friendships. He liked that his university flatmates already knew what alopecia was as he didn’t have to explain it, which he says is very different to where he grew up. However, Ben finds that he gets a lot of questions from drunk people and he doesn’t like it when people touch his head without asking. He sometimes feels a bit self-conscious that it’s possible to see when his head is a bit sweaty. Ben sometimes worries that girls will not give him a chance to get to know him because of his alopecia. However, he thinks that losing his hair helped him become more confident as he shows his personality more. 

Ben thinks that doctors should be more aware of the emotional and social impacts of alopecia, especially how hard it can be to hear that there are no answers or that treatments have limited success. His dermatologist mentioned about wigs, but Ben and his mum don’t think this would be right for him. Ben says that he would have liked more support initially, but is also appreciative that he had his parents and saw a counsellor at the hospice where his nan had been. He found it really valuable to speak to the counsellor rather than “bottle it up”. Ben is involved in supporting others with alopecia and uses social media, including a blog, to do so. He thinks it can be harder to have alopecia as a woman because bald men are more visible in society, though he finds that people are sometimes surprised that he is a young person.

Ben talks about his experiences with alopecia from when he had his first patch at age 14.

I first had my like my first bald spot when I was 14, about the size of an apple on the back of my head. I didn’t really think much of it. I was quite young. I just thought it was temporary. It will be fine, you know, nothing to worry about. Six months later, it grew back. And a couple of years later when I was 16 I had-, it came back again and I thought ‘oh’, you know, ‘no problem’. And that time it just gradually got bigger. I just covered it up, you know, combed my hair across it, you know, just a bit-, no one really noticed. And then probably I started sixth form, I got like two smaller ones on the top of my head and I thought ‘oh no’. I was more worried about it but I was still saying, you know, “It’s fine,” type of thing. And gradually over that year they got bigger and bigger and they- then they met in the middle and that was really hard. I had, I had like a big spot at the back of my head for ages and I used to wear a hat a lot. And that was the most difficult time I think. I felt like I had to wear a hat because, you know, it was quite hard walking around and I felt like people were staring. People used to look because it used to look a bit odd. And then when I-, in November last year, so almost a year ago now, I lost about-, I had about 50% hair loss on my head. So I decided to shave it all off. I felt much better after I shaved it off like it was liberating I guess, you know. It was just quite nice and it was just I had to do a speech at school the next day, completely forgot about that when I shaved my head. So I had to go in and like in front of the school and I had just my shaved head. It was just almost quite nice because everyone saw the new me in one go and it was just like, I took control of it rather than it controlling me. And then from that obviously I had little like stubble but that gradually disappeared by February.

Ben moisturises his scalp and is pleased when people say how soft his skin is.

I think the thing is like as I’m going to look like this I was thinking I’m trying to make it look the best as possible. So I don’t want to make it get to a kinda dry scalp or anything or, you know, make it look unpleasant. So I just do moisturise and I- I don’t like religiously- religiously do it like every day but like every now and again. And I do-, a lot of people when they do ask to touch my head or whatever they do like-, they say it’s like really soft and that’s quite-. It’s not- people quite- find it quite pleasant I guess. So it’s almost like something I can continue to do because it’s not unpleasant. Do you know what I mean?

How does that make you feel when somebody sort of says that? Is it like a compliment? 

Yeah, I- yeah [laugh] weirdly I think it, I think it’s like a compliment. It’s like saying, “Nice hair,” to me I guess. Cos it’s like, you know. Like a lot of girl’s, I said a lot of g-, most of my friends are girls and like, you know, usually just like to like stroke it. I don’t know cos their envious of the- the hairlessness [laugh]. And I’m like-. There’s, there’s some people just amazed by it like I have a friend who’s like, “How is it so soft?” And I guess that’s kinda nice in a way cos it’s not an insult at all really.

Ben talks about alopecia affecting nearly all of the hair on his body.

I’ve got total hair loss everywhere apart from my armpits [laughs]. And a little hair on my arms and a little like tiny patches on my knees or something. But, you know, nothing major anywhere else, no.

How did that hair loss on the rest of your body start or develop?

I think it was kind of around the same time my scalp hair kinda accelerated, I started to lose body hair and I didn’t really care to be honest. It’s body hair [laughs]. The main concern was up there [points to scalp]. So everything else was just, you know, I don’t really mind. I mean because of-, because I was fairly young when I started having it anyway, I didn’t really have any beard anyway. So who knows I could have a proper beard by now if it wasn’t for alopecia [laughs]. But I don’t really miss anything like that and it doesn’t bother me. I like it. I don’t think that’s major, not at all.

Ben’s read online about people with alopecia areata having increased chances of developing other autoimmune conditions.

I also looked into other autoimmune diseases cos apparently if you have an autoimmune disease like alopecia or any of them apparently- I read on one website you can be like, you’re more likely to get other autoimmune diseases because you’re like, what’s the word, predisposed to it I guess so. I think that worried me as well cos I read things like [ah] there’s a type of diabet-, I think it was type 1 diabetes or, you can get that, you’re more likely- you’re three times more likely to get it. It doesn’t mean I’m going to get it but, you know, that kinda worried me cos obviously alopecia is not a, a health problem apart from aesthetics but I was looking at these other things you can get. They’re all like quite bad for you in that sense. And that kind of, and also they suggest like to eat no gluten and eat healthily. So I think that’s-, I think my diet has improved significantly since, to be honest.

Ben thinks his experience of bereavement and grieving played a part in his hair loss. He saw a counsellor at the hospice after his nan died and was also able to talk about his alopecia.

I talked to my mum quite a lot about it and we thought it could be to do with the-, the doctor kinda agreed, it might be to do with like suppressed feel-, like feelings. I lost my nan when I was quite young and I was really close to her. She was almost like a second mum. And I didn’t really grieve properly if that makes sense. I kinda bottled it up. I didn’t really cry much and my mum kinda realised how serious it was when she asked me about that time and I couldn’t- I didn’t have any recollection of the funeral or anything around that time, I kinda just blanked it out. So I went to see a counsellor when I was losing my hair as well through the hospice where I lost my nan through because it was related to her. And I feel like that really helped with my experience as well, talking to someone. I talked to them maybe once a week for a couple of months, maybe not that much, not even that much. But I just felt like talking about my hair loss and things like that-, I talked mostly about hair loss and a little bit about grief. But I really felt like that kinda helped me work out who, you know, who I was inside I guess, I don’t know. You know, I think that’s what kind of contributed to my personality shift maybe is the fact that it’s not important and, you know, I talked about all sorts of things, all about my whole life but like, you know.

I just-, it kinda made me feel better as well if you put it down to that. But I still have no idea what caused my hair loss like I, I feel comfortable about that. I, you know, it’s not like you talk about that, you feel better, your hair grows back. It’s not that easy. So I have no clue.

Ben saw a trichologist (hair specialist) who gave him a treatment to use alternately with his steroid cream. He describes how he used these.

You kinda just rub it on there and it’s exactly what the dermatologist prescribed to me as well with a steroid cream but, you know, the trichologist couldn’t give me steroids but it was just a steroid cream I put on like every- every morning and every night for about two weeks and then you stopped doing it cos-. And then you’d do the, the, the blood flow ointment. You kinda swap. I did that for a couple of months and you shouldn’t really do it too much cos the steroid cream can be quite nasty to your head.

Ben didn’t like that steroid creams made his hair clumpy and flaked off when it had dried.

The steroid cream was a bit of pain because it was quite sticky and that’s why I kinda wore a hat a lot as well. I do forget like-, not just because I didn’t like it, I wore a hat because I’d rub this steroid cream in the back of my head and it clumps your hair and it, it kind of like goes all dry and turned into white flakes. And I used to do that in the mornings cos you had to do that twice a day. So it was a bit annoying before school so I had to do that as well, put my hat on to try and cover it up. And before bed it was a bit annoying as well because you’re not supposed to get it on any part-, any other parts of your body and . And I don’t know, I had to be careful of my pillow I guess at first or, you know. And I didn’t like doing it cos it’s just like-, it makes you feel more ill if it makes sense. It makes you feel there’s something wrong with you if you have to do a treatment. And the ointment thing as well that was- that was no problem doing that. I mean it kind of evaporated on your head but I didn’t enjoy doing it. It was almost like one of those things. I almost went back down to like a primary age. Your mum has to go, “Ben, it’s time to do your so-and-so.” Cos I wouldn’t do it myself [laughs].

Ben found it hard not having control over what was happening. Losing his hair has been an emotional journey of “ups and downs”.

It’s a journey. I don’t think any one is the same. I think I did mention that in one of my blogs before is the fact that like, you know, no one has the same experience but it’s quite.- But I think there’s like a general pattern that you kinda-. There’s ups and downs. And I felt like at first it was down when I was first losing my hair before I shaved it. It was just down, down, down. There was no up-side to that whatsoever. After I shaved my head I’d say it made me feel better, a bit better and then I lost my eyebrows and it was down again. And I just think the emotional bit is the fact that you’re out of control and the fact that you can’t do it-. That’s, that, I think that’s what the hardest thing is. I think that’s the same when I talk to my counsellor before. It was the- I likened it to-, cos I was talking about grief, I was likening it to when I was- my nan was ill and it’s the fact that you’re out of control. You can’t do anything to help it and it’s a horrible thing happening, not saying it’s the same as someone dying, losing your hair, but it’s the same kind of feeling. You know, you can’t do anything to help. I think that’s what people don’t like. That’s the scar-, that’s a scary thing. And I felt like ever since, I mean in February and March when I start-, I started that group- not the start of the group, when I joined the group. I felt it’s just been up, up from there. I obviously have days or like when I get a little bit sad about it. I can’t-, I can’t lie and say, you know, I’m happy all the time. I do look at myself sometimes and think kinda wish that I looked a bit different. But I wouldn’t say that’s my overall outlook. I’d say, you know, I shouldn’t wish away- wish it away because I should make the most of it because I think I could have gone the other way and been like quite reclusive or, you know, not-. I could have just wanted to stay inside, not be as, you know, talkative I guess, I don’t know, I’m quite chatty [laughs]. But I feel like- I think, I think sometimes when you feel a bit-, you feel a bit lonely I guess and you kinda put that-, you kinda blame-. I think everyone feels lonely sometimes. I think I’m quick to put it down to alopecia and I think- but everyone has this. It’s not just you but you-, but you know what I mean, it’s almost your reason for every- like for everything straightaway. I have to remember it’s not, not at all. Like just talking about now, I’m saying things I haven’t actually thought about before so it’s quite nice, you know, talking about it. 

When his hair first started falling out, Ben used a coloured hairspray to cover up small patches on his scalp. The spray could stain furniture and so he had to be careful going to friends’ houses.

The hairspray stuff I said I used to use with the brown-, brown in it. I used to be care-, I used to have to be careful with that because the brown used to come off on like furniture. And I felt like I was very conscious about when I went around to other people’s houses or my girlfriend’s house I used to like not lean on stuff properly. I used to either put my hand down here to stop like it actually making contact or-. I do forget that because it seems a long time ago but I used to really be concerned about that and like not lean back on things quite a lot because it was quite difficult.

How often would you use the sort of hairspray?

I think it was for a few months, maybe from, I don’t know, April maybe. Not, not this April, the April before and it used, I used to kinda put that on the back of my head every morning cos when I did my hair I used to put gel on my hair. Cos I just, just liked to sweep it on my face, I didn’t like spike it up but I kinda like sweeped it over. I did the hair just to spray at the back because that’s where the two ones were there and that was pretty obvious. And they, it was rea-, it was really good that, like if you looked you, you wouldn’t have known. And I used to do that, yeah, once a day. It was, it was horrible stuff though. It was sticky and it used to smell. It used to stain anything it touched, you’d have to be quite careful and do it in the shower like not- not stand in the shower and do it, you know [laugh].

Ben talks about his experience of people asking him about his alopecia.

I think some people are quite interested. I when I meet new people obviously people are too polite to just bring it up straight away but I usually get- well, drunk people ask or some people who, you know, ask after I’ve known them like maybe a little bit longer than just like a first meeting. But they usually ask, usually ask-. Some people don’t know what alopecia is. They ask why-, some people ask have I shaved it? A lot of people say that on nights out maybe it’s like, “Have you-?” like, “No,” “Do you bother to shave your head or just-?” I’d say, “No,” you know, “it’s-.” Sometimes it depends how talkative they are cos I can explain what it is or if they’re so like out of it, I can go, “No, it’s just natural,” or something. But usually, yeah, the most- most question is, “Will it ever grow back?” “Can I touch your head?” is also a big one. I don’t mind that at all. I can see why some people would mind that but I don’t mind. So it’s fine. What else? That’s the main two to be honest. I mean people- people- most people here at this university know what alopecia is which is quite good. Back home not many people really knew like they were familiar but like I talk to my flatmates – some-, they all kind of know people, of people who have it. So it’s much nicer for me not having to really explain it to everyone. 

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.

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.

Even though he was worried when his girlfriend broke up with him, Ben thinks having alopecia has built his character and made him more confident about talking to girls.

I’ve talked to many people as about people think- finding they can’t find partners or people won’t find them attractive. And I, sometimes you do think ‘oh maybe if I had hair I might be-’ you know ‘I might be better off in, in that respect.’ But I think I wouldn’t-, if I had hair my personality wouldn’t be like this. Cos at the moment I have a lot of friends that are girls and things like that but like I thought if I had hair I might be able to like do better. But to be honest, I wouldn’t be as confident talking with girls [laugh] if I had my hair back because I never really did. I just think once you’ve done that it really just builds character. And once you’ve done that you would just have confidence to do everything else cos everything else just is not important in comparison.

I was worried girls wouldn’t give you a chance, you know, cos a lot of it is quite based on looks and attraction and stuff like that. So I wouldn’t think people would give you a chance to know you. But I’ve met quite a lot of girls here and most of my friends are girls. I wouldn’t say-, I mean I’ve like ever since my girlfriend, I haven’t had another girlfriend but I still like meet girls and I’ve been on dates and all that type of stuff. So I’ve been single but I haven’t been like-, haven’t not talked to any girls [laughs] since. But I do think-, it’s what I said earlier, I do think that if I had hair I’d maybe do better with women but then I wouldn’t be like this personality-wise if I didn’t have that. When I say that, by the way, I’m not saying my personality is amazing, I’m saying like I was more confident now.

When Ben shaved his head and put a picture online, he was overwhelmed by the positive response he received and the support from his peers at school.

So over the summer holidays, I came back and I had no hair. I had to like do this year of, you know, speeches and things like that. But when I shaved it, I was almost like-. That was probably the-, nervous, before I walked in the hall that day I was- I could really feel myself going cos obviously it was big reveal type of thing unintentionally. But once you’ve done things like that, I just think nothing else really matters if that makes sense.

And what was everybody at your school’s response?

Very supportive. I mean I, well act-, when I first did it I put a picture online with my friends and I got-. I was overwhelmed to be honest. I didn’t real-, I didn’t expect the amount of people to be as supportive. I didn’t think that they’d be mean but I didn’t expect so many people to be like really kind of gathered and you know, like sent me respect, stuff like that. You know, it was just quite-, it was just very nice. So I just kind of felt like everyone was behind me with that. I’m quite lucky like that I think because I think sometimes if you don’t have that and some people might not have that – it can really affect you. But I definitely feel like the support I had at my school and stuff was really- and my family and everything was really helpful.

When Ben worked in a supermarket, young children used to ask why he didn’t have any hair.

I get little kids sometimes staring and they stare at everyone but, you know, lit-, kids. And I used to work in a supermarket and I used to hear kids like whisper to their parents in a-, “Why does that man have no hair?” Or something, you know. And I-, it used to make me feel a little bit weird I guess but I didn’t mind like. And some parents used to be horrified. You know, some-, I had a kid come up to me once and ask me where’s my hair. And he-, he was so little and I was just like, “Oh I left it at home. I didn’t bring it in today. I’m sorry.” And he was like, “Oh cool, ok.” And his parents, you could see the parents look of relief cos I didn’t feel-, I wasn’t offended but I think some people are just interested. I don’t think it’s the baldness, it’s almost like the no eyebrows and it just looks a little bit, you know, a little bit odd. I reckon if I had eyebrows and eyelashes, people wouldn’t- wouldn’t really question it as much. I definitely think it’s through being younger as well cos obviously I’m a stud-, well I’m obviously not a student, but I’m obviously not old enough to be naturally bald if that makes sense. So some people do ask.

Ben joined an alopecia areata Facebook group. He says it gives him “a sense of community” and a support network.

I was just looking for other people because I felt-, cos that’s when I started losing my eyebrows and that’s when I kinda thought, you know, I felt quite alone I guess. And I kinda tried to find other people. I found a group and the group is awesome like people just post there. Like when they first join the group, they post their story or whatever, you get loads of people commenting and stuff. It’s like several thousand people. It’s not everyone responds to everything but it’s just quite a nice little, like, I don’t know like a support network I guess. It’s like on my Facebook, it’s a Facebook group. So every time I go on my Facebook there might be a couple of posts by people. And it’s either people saying, “I’m about to shave my head today, you know, kind of send me, send me luck,” or, “This is my new wig,” or all that type of stuff. And it’s quite, it’s just given me a sense of community and that’s why I went to blogging and to the Twitter and stuff when I set my Twitter up. The thing is I think ever since I found them that kinda helped as well like writing the blog, talking to other people. And to be honest I talk to a lot of people who are losing their hair, who are curr- in the process of losing their hair like someone from America or different countries and they feel like they need to talk to someone cos I’m kind of feel like I’ve come out the other side of it. And I felt I wanted to talk to people who are me, now a year ago because I, I was probably like one of the hardest things I’ve ever done if that makes sense. So I feel like I need. I wish I had someone to talk to me like. So I’m trying to find-. That’s why I set up the Twitter up to try and help find people and I have found quite a few people to talk to and that definitely helped me as well.

Ben found it helpful talking to others with alopecia online. It helped him think in positive ways about his experiences.

There’s this one lady I talked to said about like she said “Life cha-,” it’s not life-changing, she said, “Amazing” or something. I was interested because, you know, not many people would say that. So I messaged her and she- she sent me this message that was- she wouldn’t-, she, if she had a choice she wouldn’t-, she wouldn’t go back. She would stay with it. And she feels it’s made the- made her the person she is. I feel like there’s different stages almost. At first it’s really painful and then you kind of, you know, you kinda get used to it and then but you still wish for it and eventually I think you come out the other side and you realise-. I don’t think I’m quite at- right at the end where she is but I think eventually you kinda realise once you’ve got rid of everything else, it’s really the person inside that counts. It sounds really cliché but I made an analogy to say like if you look a- look at a wall and that wall was a person, if you sand the paint off you can really see like what the wall’s made of, what material of the wall is and I think if you think- see the paint as, you know, the paint is the hair and alopecia is the sandpaper. It’s a bit cheesy but you know, it’s kinda true. It’s kinda true if you think about it. You really get to know the real person after that.

Ben would like doctors to think not only about treatments but also the emotional side of alopecia, including uncertainty and confusion about the condition.

To be honest the doctors were nice. No one was ever rude but I think maybe more understanding I guess. I don’t know. So I think they just because they’re very medical kind of people they kinda see everything black and white and they’re like, “You have a problem, try that, see if it works,” type of thing. I think it’s a lot more-, I think it’s more of an emotional problem than more of a medical problem. I think they, they need to acknowledge that I guess because they are very like – you ask them questions, they say, “I don’t know.” And that’s fair enough if that’s the answer but [laughs] it’s not-, it’s quite abrupt. It’s quite hard hearing that.