(Audio or text only clips) Annie Y has had alopecia totalis since she was 3. She has worn wigs since the age of 14 and finds that most people are unaware that she has the condition. Annie Y thinks it’s important to hear positive stories about living with alopecia and not just those focusing on stigma.
Annie Y has had alopecia totalis since she was 3. Annie Y was seen by medical professionals when her hair first started to fall out in patches and then fully on her head. She took zinc tablets and had a steroid ointment for her scalp, but she doesn’t remember much about these medicines. Her eyebrows and eyelashes returned but the hair on her scalp never grew back. She thinks that the timing of developing alopecia was quite lucky because she didn’t feel bothered about it at that age and it is the way she has always remembered it being. She has not seen any doctors since because she doesn’t think there would be much point. She also has had eczema her whole life; it tends now to be worse in the winter months but finds it is mostly manageable with moisturisers.
Annie Y found it a bit tricky moving schools when she was 8 years old. The other students had a lot of questions and so her school held an assembly to explain alopecia. Annie Y had good friends at school and, although she never heard of any comments being made about her, she is confident that her friends would have handled prying questions. Annie Y switched from bandanas to wigs when she was 14 years old, as this was a time when she started to feel a bit more conscious of her looks. She is grateful that her parents purchase real hair wigs for her as these look very natural, to the extent that most people are unaware that she has alopecia unless she tells them. Although these wigs are quite costly, Annie Y likes their quality and that she can choose how to have them cut as well as be able to wash and style them as normal. Annie Y finds that most people she has known from university onwards are unaware that she has alopecia because she wears wigs and doesn’t talk about it. She sleeps in a wig as her housemates are currently unaware but says that she wouldn’t mind telling them or co-workers, it’s just not something that she feels is necessary to bring up to talk about.
Annie Y says that she has never encountered stigma for having alopecia, although she knows that other people with the condition have. She never viewed her lack of scalp hair as a big problem and she praises her parents for never treating her any differently because of it. She doesn’t feel a need to talk about it but she knows that she has people in her life who would listen if ever she did. Annie Y thinks it’s important for other young people with alopecia to know that it’s fine to talk about it but that it’s equally fine if they don’t feel the need to because it doesn’t have to be a big deal. She finds it refreshing to hear positive stories of living with the condition. Everyone she has ever told about her alopecia have been understanding. Annie Y explained that she doesn’t tell many people about her alopecia because it can detract from her as a whole person: she doesn’t want it to be a defining characteristic, as the girl who wears a wig’, and prefers people get to know her first.