Overview of physical appearance and alopecia
The first symptom of alopecia was often a small area of hair loss, although for a few people there was complete hair loss within a short space of time. Ben lost his hair over 6 months and felt “weird” seeing himself “instantly with no hair”, but says he got used to it “pretty quick”.
Many found small areas of hair loss on their heads were not too noticeable. Emily says because “I had long hair, it was really easy to hide it”. If more patches developed or became bigger, covering them became more challenging and some found it quite stressful. Regrowth can also be uneven and hard to manage, especially when new hair is thinner or curlier than before. Becky’s hair grows back quickly as patches of fine baby hair but then falls out when it gets to a certain length. The uneven length of her hair makes styling difficult and she says, “It’s always got random bits growing and some bits longer than the others”. Most people worried about small areas of hair loss being visible if their hair got wet (such as when they went swimming or in the rain) or ruffled. Meghan says she will sometimes “freak out about going outside on a windy day”. When Kayla had a job in hospitality, she was asked to tie her hair back and felt self conscious about her alopecia showing. Wearing a wig meant she could tie her hair back more easily. Elizabeth used to wear a scarf around her neck to tuck her hair in so that it wouldn’t get blown about by the wind.
Many people we talked to used wigs and found this helped them ‘fit in’. As Rosie explained, “it’s just wig on, eyebrows on, out the door”. For some, it also gave them more confidence. You can read more about people’s experiences with wigs here. A few people preferred not to wear wigs or hats and to keep their heads as they were with alopecia. Sometimes this meant that patches were visible or their scalp was fully bald. For a few people, shaving their hair off completely took away the pressure of having to manage and worry about hair loss. Michael, Ben and Emily all found shaving their heads was a way of taking back some control over what was happening with their hair loss. Ben often moisturises his scalp and likes it when people compliment him on how soft his skin is.
Appearance and identity
Appearance was especially important for some people when they were teenagers and young adults. Many said losing their hair had a knock-on effect for how they thought about themselves. For some, there was a period of adjusting to their hair loss and how they viewed themselves. Hannah sees being young as “your prime time of doing your hair and going out and getting your hair done”. Ben says he didn’t care that much about his appearance when he was 14, but that it mattered more to him when he was 17. When Emily shaved her hair off because of alopecia, she thought “how do I express myself now?” A few people had noticed that others perceived them differently than before if they had a shaved head or were wearing coloured wigs. A few people spoke about having previously enjoyed dyeing their hair different colours and re-designing their style as an important part of their identity. Alopecia could make this more challenging and styling hair took time and energy. Some people felt very self-conscious about going out and worried that despite efforts put into styling their hair to cover patches, they might still show. A few people worried that dyeing or styling their hair a lot might damage the remaining hair. Others, like Hannah, tried out new hairstyles and colours as a way of coping with their hair loss as it was happening. She says that she “had fun with it… I’ve had a Mohican before and I’ve had pink hair and blonde and red”. For Hannah, these are not hairstyles she would have considered before but trying them out was a way to “find the positives in what’s happened… it makes you explore and have more fun”. For some people, wearing wigs was a way to ‘stand out’ and experiment with different looks. Compared to dyeing hair, wigs were sometimes seen as a quick and easy way to try out different styles, colours and looks, which could be fun. Emily likes to wear one on nights out which is “a lovely blue wig … all mermaidy”. A few people felt alopecia could be harder for women because of the stereotype of women having long hair, whereas baldness was more accepted as part of the male pattern of aging. Rosie said she mostly wears a wig because “it is such an oddity to see a woman walking around without hair”. Laurel said, “When you’re a girl, you want to have your hair all pretty and I didn’t have that”. Clothes, make-up and styling
For some, it was not just about the hair that had fallen out or which was regrowing but also other aspects of their appearance which were affected by alopecia. Laurel thinks head hair makes a big difference to how a person’s face looks. Some people changed their clothing and make-up style to fit with different wigs.
People were often aware of ‘standing out’ with alopecia and some felt they had to pay more attention to how they looked generally because of it. This could mean drawing attention away from their hair loss and onto other aspects of their appearance. Laurel says she put on more foundation, got new ear piercings and used eyelash extensions because this “distracts the attention away” from her alopecia. Annie X experimented with artistic make-up. However, others tried to avoid drawing attention to themselves. Krista says she dressed in black and grey because she “wanted to look bland so nobody noticed” her.
Clothing could become especially important after a diagnosis of alopecia for those who were already image conscious and enjoyed expressing themselves through self-styling. Emily says she spent more on clothing after developing alopecia. She changed her clothing style: “I felt like I had to wear a lot kind of more punkish clothes”.