Alopecia could affect many aspects of a person’s life, including their social life, exercise and hobbies. Sometimes this was for practical reasons, such as maintaining a hairstyle that covered up areas where their hair had fallen out or wearing a wig, hat or scarf could interfere with certain sports and hobbies.
Losing self-confidence and dealing with the emotional side of alopecia could also have a big impact on some people’s social lives and activities. A few people talked about times when they didn’t want to go out of the house.
Exercise and sports
Many people who did not want others to know about their hair loss said doing sports and exercise could be difficult. Exercise, including going to the gym, often meant sweating and patches of hair loss could become more visible as the hair became damp or moved. Michael gave up playing football and rugby as he worried about bald patches being “on show”. For those with long hair, tying it up also made it harder to conceal patches and some avoided sport activities altogether which needed them to tie up their hair or have it in a particular style. Some people wore wigs but these could become less secure when they were active and sweating. Beth would love to do yoga but worries that her wig might fall off with some of the poses. Kayla gave up Zumba classes because the adhesive under her wig would get damp and lose its stickiness. She now only does dance that is “not too physical”.
A few people said they don’t go swimming in a pool or the sea because the patches of baldness are more visible when their hair is wet. Hannah didn’t go swimming for three years because she didn’t feel comfortable about revealing her hair loss.
Some people continued with sports and talked about dealing as positively as they could with stigma when their hair loss became visible. Ben has always played rugby and his team are now “quite supportive” about his alopecia, but he sometimes make jokes about his baldness and lets them tease him about it.
Most people were very aware of other people noticing their hair loss or felt that they stood out in social situations because they often wore a hat, scarf or wig. Elizabeth says she was “so scared of what people might think”. Annie X “didn’t like people looking at me or making assumptions about me.”
Alopecia could affect a person’s social life and self-esteem because they worried about what others would think and how they would react if wigs or carefully placed hair moved out of place. The things that other young people took for granted could make them anxious, such as going on school trips, going out to a bar or house party, joining friends on holiday, wearing a bike helmet or even just going outside on a windy day.
Some people worried that others would comment on their appearance. This sometimes stopped them from doing social activities. Annie X never went to parties, as she “didn’t really feel comfortable enough in myself to go out”, and because of this people stopped inviting her. Having alopecia could also affect how people dressed and used make-up.
However, most people had close friends who they felt comfortable socialising with. Some felt confident in themselves and tried not to let other people’s reactions affect them. A few said their alopecia didn’t affect their social life and they treated changing their hairstyle or wearing wigs as part of their getting ready and dressing up routine.
Many of the people we spoke to were active on social media sites. Sharing photos on social media sites like Instagram and Facebook could create some anxieties and involve unwanted attention. People often didn’t have control over the photos of themselves that other people posted, although they could sometimes ‘un-tag’ themselves. Annie X closed down her Facebook account as she felt it was too easy to compare herself to others and this had a negative impact on her self-esteem.
A few people talked about the positive role that social media could have as a platform for raising awareness about alopecia. When Laurel shaved her head for charity and posted it on Facebook, she received supportive messages from people she didn’t even know very well and raised over £2,000. Social media was also used by some people to connect to others with alopecia to share information and support.
Some people felt quite limited in the kinds of activities they could participate in. A few people talked about how joining in with friends who wanted to go camping or try new experiences like bungee-jumping or scuba-diving, could be tricky. Some worried about how people would react to seeing their hair loss, for example if their wig came off or they chose not to wear one. The burden of having to explain their hair loss to others, or risk standing out because of their hair loss, could be emotionally draining. The impact of alopecia on self-confidence made hobbies that involved performing on stage particularly challenging for some young people.
hobbies remained an important part of enjoying life and having fun for young people with alopecia. Michael found doing the Duke of Edinburgh awards helped develop his confidence. Elizabeth says playing the guitar and singing help with her confidence and are outlets for her emotions.