Michael

Age at interview: 19

Age at diagnosis: 13

Brief Outline:

Michael has had alopecia since age 13. Since then, his hair loss has occurred in cycles and particularly when he is stressed about exams. Michael says he is now much more comfortable with alopecia and that he has become a more accepting person.

Background:

Michael is 19 years old and an undergraduate university student.

More about me...

Michael has had alopecia since he was 13. His hairdresser found a small bald patch on his scalp; Michael didn’t know what alopecia was at the time and he remembers worrying about it for the rest of his haircut. On the way home, Michael’s mum explained and he remembers being very upset. Since the age of 13, Michael has had cycles of hair loss and regrowth. When he was 17, he decided to shave his head and he has kept it shaven for the past year and a half. Michael has also lost some arm hair and facial hair, such as from his eyebrows. He has learnt to use make-up to fill in some of the missing eyebrows with help from his mum and female friends. Michael finds that stress is a trigger for his alopecia, particularly around exams. He thinks that his first bald patch developed from the upset of an attempted break-in at his house when he was age 13.

Michael’s first appointment with his GP was “not very helpful”. He felt that he learnt more by looking online than his GP knew about alopecia. Michael feels that doctors don’t always take alopecia very seriously. Michael’s mum took him to see a private dermatologist as the NHS waiting times were very long but it seemed there was little they could do for him. Michael has tried steroid creams and tablets but finds that the only thing that works are steroid injections in his eyebrows. He stopped taking steroid tablets as his friends and family noticed that his personality had changed, making him a bit “moody and hyper”. Michael has also tried some alternative therapies, some of which he found out about online, including Indian hair oil and coconut oil. He says they made his scalp smoother but did not stimulate regrowth of his hair. Michael has read online about some research for new alopecia treatments. He is hopeful about the new treatments being developed but worries that it might be very expensive and have severe side effects.

Michael was initially very self-conscious about his hair loss, though he feels much more comfortable about it now. He says that he used to be constantly worried that people were looking at him and preferred to wear hats most of the time. It was hard to concentrate at school and he remembers his hair falling out onto the pages of his exam paper on one occasion. Michael’s mum gives him a lot of support and helped him go to a counsellor. He says that talking to the counsellor made him feel “calmer” after a few weeks. Michael says that he also has some good friends who have been there for him and one particular teacher at school who boosted his self-esteem, helped him get early study leave during exams and let him sit at the back of the exam room if Michael wanted. Since shaving his head, Michael feels more comfortable and in control of his hair loss, although he says that some people might perceive shaved heads to look “rough”. He has recently started playing Gaelic football again and has also joined an alopecia Facebook group. He tries to help other people on the group, including parents who are affected by their child having alopecia.

Michael’s advice to doctors is to be aware of the emotional impacts of alopecia and to acknowledge that young people may be struggling with it. His advice to other young people with alopecia is to maintain confidence and be positive. He says that “alopecia isn't the end of the world,” even though it can feel like it at times. Michael is proud of the things he has achieved and learnt through his experiences. For example, Michael says his friendships are stronger and that he has grown as a person to be more accepting.

Michael worried about other people seeing his bald patches and his hair falling out, which distracted him at school.

During school I became more distracted, and did not concentrate a lot of the time. I would often try and sit at the back of the class, so I felt no one was looking at me. And in my exams I sat at the back, because I always felt like someone was looking at, looking at me throughout. In my A level exams, my eyebrow actually fell out during one of them, or noticeable anyway. So I had hair on my page as I was attempting to work. And that was one of the biggest distractions ever, so. And lower down the school when I had more hair, and the hair loss was occurring, as it was falling on my page during the class, I just didn't pay attention, and I started getting distracted more and more.

Michael had help from his mum with deciding about steroid treatments. He tried steroid tablets but thinks that they affected his mood and made it more difficult to sleep.

But then in terms of the different steroids and steroid lotions, she just helped me like decide that, not to go with steroids again because of the impact it had on my personality last time. In terms of making me hyper or moody. Which it seemed to do. So I've ruled that out as well. So I'm just waiting for another treatment now, and then I'll make a decision then.

Was that impact on sort of personality and mood something that your doctors had mentioned?

Yeah, they mentioned the possible, possibility of it. But I hadn't noticed it myself. But my friends and my mum noticed it, so. It was-, I didn't carry on taking them for very long.

In what sort of ways did it have an impact on your personality?

Mainly in terms of making me quite hyper, I think. Like quite excitable, like at random points in the, in the day. And at night time I used to find it, find it hard getting to sleep. Which I still do, but that might be a separate issue.

What kind of impact would that have the next day, if you'd sort of struggled to get to sleep in the evenings?

I used to struggle getting to sleep partially, well maybe due to the medicines, but also in terms of thinking at night time when I was in bed. That was when I did most thinking. And I used to get very upset in bed. And then I was, I'd be really tired the next morning. Or ill. Either one. So on top of not wanting to go to school anyway. That was a struggle, as well.

Would that be sort of like a, feeling ill because you'd been sleep deprived, kind of?

Yeah, I think so, feeling that way, but-. Yeah. I think not like, staying up late thinking caused me to feel ill in the morning, and then I didn't want to go to school anyway, because I didn't want to be seen, almost. So it was just difficult. Especially when I was around 14, 15, so.

Michael remembers a time when he was recommended an oil treatment.

I was recommended a product from India, by a woman in the Post Office, which was strange. Yeah, near my old school. We just ended up having a discussion about alopecia, and her daughter had it, so. And what cured it for her, or seemingly, was this oil. So she sent me the information, and I got it as well. But I didn't stick to using that really, because it smelled funny, mainly. And then coconut oil I just bought from the shop, and that made the- it helped my head be smoother, and my skin, it improved that. But, but it didn't really help with the alopecia.

Can you remember roughly how much they would have cost each treatment?

They were both quite cheap, in comparison to other remedies online. I think the oil from India was probably £5, but it took a while to get here. And then the coconut oil was just like £3 in the shop. 

Michael explains how difficult it was to see his hair falling out every day.

The hair loss off my head was the most difficult. And also my eyebrows. Waking up in the morning and seeing it on my pillow was just, it just made me not want to get up or get out of bed. And then having a shower, and seeing more, more hair, or you know, just going down your body and on your hands as you wash your hair was horrible. Because I couldn't do anything to prevent it at all. It was inevitable that it was going to happen, and I didn't know when it was going to happen.

I needed to wash my hair every morning, so I could move my hair to cover the patches. And that, even doing that would make me see the different hair loss. And every day it would be horrible, every morning. And it was almost every morning that there was hair loss. So it was almost became expected. But even so, it was still difficult to deal with. But then, but then once I shaved my head I didn't have to do that, deal with that any more. So it was, it made getting up much simpler.

Michael thinks that people see him differently with a shaved head.

Yeah, I think I appear older than I am. When I've, when I'm on a night out, and I look maybe a bit rougher than I am, as well. Saying that [laugh] having a shaved head's rough, but some people seem to suggest that it is. Or it may be. Because I look almost quite hard, at times, compared to the young boyish hair look that I previously had, so. But obviously speaking to people has made them realise that it's not the case, and think- don't know. They acknowledge that I am different, or I look different, but- almost quirky. Some people don't even realise that it's alopecia, they think it's a fashion statement or a choice of my own, and that it looks good in their opinions.

Michael thinks that girls have more opportunity to wear wigs and look more natural with drawn on eyebrows.

People, some people seem to think that it's more difficult for girls to have alopecia, which I feel it is sometimes. But girls have the opportunity for wigs more, more readily than males. So it's almost impossible for us to hide. But I'm quite accepting of it now, so it's not as much of an issue any more.

Why do you think it is that maybe females have the option of wigs more so than males?

The majority of wigs seem to be for long hair. And females in general seem to have longer hair. And also in terms of eyebrows as well, it's easier for women to draw on eyebrows than it is for men, in terms of make-up and things like that, so. It's, it's easier for them to make it look more natural than it would be for a male's eyebrows.

Michael uses make-up to fill in part of his eyebrow.

When I'm going on a night out I normally shave. Well, I have a shower and brush my teeth and everything, and then I shave my head and face afterwards. And then I, because I have like in partially one eyebrow, I fill that in a bit with make-up. But as it's grown back, that's declined. But that's what I do. And then get ready after that, clothing-wise. Day to day life I normally just get dressed normally, and stick a hat or a cap on, and just get on with it.

I initially tried to fill in my eyebrow using eyebrow pencil, but I was not very good at it. But then my mum took me to her beauticians or whatever, and she showed me how to do it, with the pencil. Since that, I've came to university. The girls in my flat have advised me to use powder instead, because it's better, apparently. And they've showed me how to do it. So I've started using that more recently, and it seems to be going okay, anyway so.

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

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.

Michael’s close friends have “always been there” for him.

In Year 8, when I first told my friends, they were all ridiculously helpful, and like amazingly nice, really. Some of them didn't know what it was, so I did explain to them. But from then on they were just helpful, and always there for me if I needed to talk to someone. My friendship group has changed significantly since then, but my closest friends have always been there for me. And I, I always know that they're going to be there for me, as well.

Michael finds his peers at university seem to know what alopecia is.

I think since coming to university I've met a lot of new people and they all seem to know what alopecia is. Like if they ask me why I've got no hair and I say, “Alopecia,” someone else will say, “Oh yeah, I know someone with alopecia.” Or just like someone famous, like…

Jonjo Shelvey, who used to play for Liverpool football, with alopecia, comments. Which, I don't care, really. It's nothing. So a lot of people know what alopecia is and it's not really frowned upon, but some people who don't know what alopecia is, since seeing as I've got a shaved head, seem to think I might be a bit scary or something. But I'm not [laugh].

Michael’s mum paid for him to have private appointments with a dermatologist and a counsellor.

Can I ask a bit about finances, in terms of the dermatologist, private dermatologist you had eventually?

Yeah. I'm not sure how much it cost initially, my mum paid for it. But we only went to see him once or twice, it was more to reassure me about options and the condition itself. That I was okay, almost. And I think then I went into the NHS system after that. And it's been fine, really. When seeing the specialists, I feel much more comfortable than the team almost, because they don't have the same knowledge as the specialist himself.

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- she’s done all sorts to try and help me become more comfortable with it. 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, so.

Michael felt like alopecia was the “end of the world” when he was first diagnosed, but now knows it doesn’t have to be.

I'd say alopecia isn't the end of the world, at all. That's what I initially thought it was. Like I thought my life was going to be ruined from the start, as soon as I got it. But it wasn't. I've done many things in the past few years, and met many different people, who've liked me for who I am. And I've done my GCSEs, done my A levels, and I'm now at university, and I'm getting on with my life as I would if I didn't have alopecia. It's not stopped me doing anything, really. I think you've just got to remain optimistic. And there may not be a solution right now, but in years to come there may be. And if there's not, it's not that important, like. There are more important things in life. And it does have a psychological impact on you, but it doesn't affect your health in other ways. So if you can try and maintain confidence and positivity, then you should be okay.