Being at school or university, studying and alopecia

Many people we spoke to had alopecia while they were in school, at college or university. They talked about different aspects, such as exam stress being a trigger, wanting to “fit in” with their peers and other people’s knowledge about alopecia.

Some people found that their hair loss had a big emotional impact on them which affected their experiences at school, college and university. Being around peers and meeting new people, including housemates in shared accommodation at university, made some people feel self-conscious. There was a range of experiences which varied over time and often linked to how much knowledge the people around them had about alopecia.

A few people had alopecia when they were in primary school and found other children were “curious” but mostly “accepted” them as they were. Some found it became harder during secondary school and a few had been bullied or had rumours spread about them having cancer. In contrast, lots of the people we talked to found that their peers at university had more knowledge about alopecia but some still worried about ‘fitting in’. You can read more in other sections about the emotional impact of alopecia and on physical appearance.

Worrying about her hair was a big preoccupation for Arti when she was studying and meant sometimes missing lectures and seminars.

Age at interview 22

Gender Female

Age at diagnosis 22

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Emily wanted to have the flexibility to miss a few lectures and felt her lecturer didn’t fully appreciate how alopecia was affecting her studies.

Age at interview 20

Gender Female

Age at diagnosis 19

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However, lots of people said they were given good support and remember particular friends or teachers who helped and reassured them.

Emilie says her reception teacher helped her a lot when her hair started falling out.

Age at interview 18

Gender Female

Age at diagnosis 4

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Grace knew someone at school who also had alopecia and they would giggle’ about it together.

Age at interview 18

Gender Female

Age at diagnosis 10

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Stress and upset from school, college and university could be a trigger for some people’s alopecia starting or becoming more extensive. Many people thought the stress of their exams had set off their alopecia. Becky said she’s “not a stressed person” but always seems to lose her hair around times that are supposed to be stressful like exam time. Hair loss could also be a distraction at school. Michael says he often sat at the back of the classroom and didn’t want to go to school because he “didn’t want to be seen”. He remembers a time when one of his eyebrows “fell out” during an exam and onto the page which he says was the “biggest distraction ever”.

Rosie is starting her degree soon and expects that for the next three years she will have a cycle of growing, exams, hair loss.

Age at interview 18

Gender Female

Age at diagnosis 12

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Being in school with alopecia

A big concern for many young people was about ‘fitting in’ at school. Some felt wearing a hat, bandana or scarf, or having a bald head, made them stand out. Styling hair to carefully cover patches and wearing a wig or scarf could make it difficult to take part in school activities such as sports, plays and non-uniform days. Not being able to join in with the latest hair styles or having to wear a cap for swimming when no one else did made them feel different to their peers.¬†Annie X found every day a struggle when she was in Year 7 and the beginning of Year 8. She would try and make herself sick on Sundays so that she didn’t have to go into school the next day.

Kayla explains the challenges of not wanting to go swimming at school and college.

Age at interview 20

Gender Female

Age at diagnosis 4

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Grace had days when her hair wouldn’t sit the way she wanted it to. She says she would have a teenage strop’ and not want to go to school.

Age at interview 18

Gender Female

Age at diagnosis 10

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Danny says there are more people at his secondary school who also have alopecia than at primary school.

Age at interview 14

Gender Male

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Some people had experienced bullying at school. Other children could be unkind, picking out their differences or spreading rumours about them. Grace knew some children in her school talked about her “behind her back”, saying that she had cancer.

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.

Age at interview 15

Gender Female

Age at diagnosis 11

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When a rumour went around school that Rosie had leukaemia, it hit her hard for the first few days. But it dissipated and she got over it quite quickly.

Age at interview 18

Gender Female

Age at diagnosis 12

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Some people said they were grateful for the support they received from teachers, but others felt more could have been done in their schools to stop bullying.

Imogen was verbally bullied and feels she didn’t get the help she needed from her school.

Age at interview 17

Gender Female

Age at diagnosis 7

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Annie Y thinks her school told everyone about alopecia in an assembly. She has never had any issues at school and her friends are quite protective over her.

Age at interview 23

Gender Female

Age at diagnosis 3

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Laurel’s school has on the whole been very good about her wearing headbands and headscarves, but on one occasion a teacher commented that her headband did not fit with the school uniform rules.

Age at interview 17

Gender Female

Age at diagnosis 15

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Returning from school holidays and moving schools

Transition periods and returning after school holidays could be important times. Rosie remembers coming back after the summer holidays when her hair started falling out and thinking it must have been quite a “shock” for everyone to see all her hair had gone. She thought that her class were “really nice about it” and just “curious”.

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.

Age at interview 18

Gender Male

Age at diagnosis 14

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Some people had moved schools, either because they wanted to or if their family had moved to a new place. Kayla says moving to a new secondary school let her “start afresh”. The transition between primary and secondary school was another period of change that some people spoke about. Many felt there was more focus on looks at secondary school, sixth form and college which could make them worry about their appearance and being judged. Annie X goes to an all-girls secondary school and thinks there’s a lot of emphasis there on hair styling. Ben says he started to care more about his appearance in sixth form and became more interested in having relationships

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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.

Age at interview 20

Gender Female

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University life

Starting university could involve meeting lots of people for the first time and could mean increased pressure to socialise. Worrying about the impact of alopecia on appearance and physical comfort could become a constant preoccupation for some people. This includes concerns about how best to style their hair to cover patches and whether to wear a hat or wig to lectures. Some people talked about the time and energy it took trying to get their hair “right” and Emily says she can sometimes “work myself up a little bit about it.” It could also be a practical issue. For example, some people worried that if it was windy on their way to classes their styled hair could become ruffled, revealing bald patches, and wearing a wig in a warm lecture hall or seminar room could be uncomfortable.

When all of Emma’s hair came out in her second year at university, she worried that she wouldn’t fit in any more.

Age at interview 23

Gender Female

Age at diagnosis 14

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Starting university and moving into halls made a big difference for Beth. It could be difficult to get the privacy to relax without her wig on.

Age at interview 24

Gender Female

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For those who wore wigs, living in shared housing or halls of residence could make it more difficult to relax without their wig on, as well as wash and dry their wigs. This was particularly a concern if their housemates did not know about their alopecia.

Many found starting university was a welcome change. Meghan says her school and sixth form had been “cliquey”, but that university was totally different in a good way. Many liked that they had a wider circle of people around them to choose to be friends with. Being amongst people who were a bit older could also mean that people were more understanding and knowledgeable about alopecia. A few people found that their friends and housemates at university had known of a person their age with alopecia before, and so they had some understanding already.

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

Age at interview 19

Gender Male

Age at diagnosis 13

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Friendships, relationships and alopecia

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Money and alopecia

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