Some people said that having alopecia had no impact on their sleep, but others mentioned ways it could affect them. The main examples talked about were:
- hair falling out on pillows and bedding;
Some people noticed this symptom of alopecia and found it very upsetting. Waking up to hair “all over my pillow” meant Annie X was “constantly being reminded that it’s happening”. Others said they never saw much loose hair on their pillow or they only started to notice some because they were checking for it.
- routines with treatments and washing wigs;
Routines, such as applying treatments or washing wigs, were often done in the evenings or before going to sleep. This includes putting on topical steroids for alopecia areata. Ben says he had to be careful when he used steroids creams on his scalp at night in case it rubbed on to the pillows and his face. Rochelle has some shop-bought natural remedies which she uses at night so that their smell fades before morning. Rochelle also likes to have satin pillowcases and headscarf as she’s heard this is better for her skin and hair than cotton. Many people said that it was best to wash their wig in the evening and let it dry overnight. Emily had a special wig stand to put hers on to help it dry in shape.
- wearing wigs or hats at night-time;
Some people wore their wigs to sleep in, others didn’t or rarely wore theirs overnight. A key reason for wearing wigs overnight was the worry that others, like flatmates, would be shocked to see them without it. However, lots of people said it could be uncomfortable and wear out the wig more quickly. Arti thinks her wig would become knotted and difficult to detangle if she slept in it. Annie Y finds that the wig gets matted if she sleeps in it, which means she has to use conditioner more, and she says she sleeps better without the friction of the wig. Kayla says sleeping in her wigs is “still worth it” for her as she prefers to wake up with it on. Beth liked having a room of her own which she could lock at university as “then no one came in, so it was okay to take it off, in your own space”. For those with scalp alopecia who didn’t wear wigs or didn’t wear them at night, their heads could get cold and some people preferred to wear a hat. Imogen says a hat “brings pressure off my head” when the skin on her scalp feels “very delicate”.
- worry and stress affecting sleep quality;
The emotional impact of alopecia could make it hard to sleep. Emilie finds she sometimes has upsetting dreams about alopecia. Krista says she would often cry herself to sleep. Michael says night-time is when he does “the majority of thinking” about alopecia. He also found that oral steroids had a side effect of disrupting his sleep and energy. A few people said that it was an emotional struggle to get up and out of bed in the morning when they felt down about alopecia. Emma remembers when she lost all her hair for the first time and after “waking up in the morning, every mirror I saw I was just bursting out into tears”.
- getting up earlier in the morning;
Some people found their treatment or styling routine with alopecia meant they had to get up earlier. Kayla says she saves about 30 minutes in the morning now her eyebrows are tattooed on and she doesn’t have to use makeup to draw them. Before Ben shaved his head, he used a tinted spray to help cover patches and had to remember to take this when staying over at other people’s houses. Ben says he would wake up early to “fix my hair”, whereas now his morning routine is a lot quicker. Beth’s eyelashes fell out while she was at university. Her eyelids were sometimes sore when she woke up and it would take a while for the swelling to go down.
Staying over at a friend or partner’s house could involve several of these issues, such as worrying about whether to wear a wig at night and having to get up early to do treatments or restyle their hair. Emily finds wigs uncomfortable and sometimes drops hers home during a night out if she’s staying over at her boyfriend’s and doesn’t want to carry it back the next day. Kayla says it was difficult camping with friends when she was younger and styled her hair to cover patches, as they didn’t understand why she was concerned with her hair. When Beth stays over at people’s houses after parties, she sometimes worries about her wig coming off during the night and “what if it’s down at the bottom by my feet when I wake up?”
You can read more on the impact of alopecia on young people’s social lives and activities here.