The main place people talked about having alopecia was the scalp. Other areas of the body where hairs grow can be affected too, including:
- the face: eyebrows, eyelashes, nose hair, beards and moustaches
- body hair and pubic hair: arms, legs, armpits, chest, stomach and around the genitals
The subtypes of alopecia areata are based on the body parts affected as well as the severity (how much hair loss occurs). For example, alopecia totalis is loss of all the hair on the face (e.g. scalp, eyebrows, eyelashes) while alopecia universalis is hair loss everywhere on the body.
Alopecia on the scalp
All of the young people we talked to had experienced hair loss on the scalp. For some, this was the only body part affected but others had hair loss in additional places too. There were different parts of the scalp and patterns of hair loss, including bald patches and sections along the hairline, parting, temples, crown and nape of the neck. Meghan remembers her first patch at the back of her hairline was shaped like “vampire fangs”.
Depending on where the alopecia was, it could be difficult to check bald patches on the scalp and apply topical steroids. Regrowth was often uneven and in different patterns, making hair styling difficult for some.
The wind and cold can be unpleasant with alopecia on the scalp. Rosie says she’s always the first to notice when it starts to rain if she goes out without a wig on, with a “raindrop just on the middle of your head”. Sunburn on the scalp could be an issue too and meant using plenty of sunscreen to protect the skin. Some people felt uncomfortable about others seeing their patches or whole areas of the scalp without hair. A few young people had experiences of other people touching their bald scalp without asking. Ben says he doesn’t mind if someone wants to feel his scalp, providing they get his permission first.
Many people tried to cover small patches by styling their hair, including changing their parting or using hairspray to fix hair over a patch. Covering up bald patches could affect everyday things like the way a person sat and turned or moved their head. Lots of people thought that hair is often a big part of identity and some found it difficult to see themselves in mirrors or photos without hair on their scalp (see also about the emotional impact of alopecia). Laurel doesn’t like to wear certain types of clothes anymore as she thinks it looks “weird” without hair covering her neck and shoulders. Elizabeth tucks her hair into a scarf worn around her neck to stop the wind moving her hair around and showing the patches. Krista often wears a scarf as it’s “like a comfort blanket”.
Hair loss on the scalp wasn’t always seen as an issue. Emilie likes her look and enjoys expressing herself through clothes and accessories. A few people talked about the pleasant feel of stroking their bald areas, the breeze and moisturising their skin.
Alopecia and the face
Some people had patches of hair loss in their eyebrows and eyelashes or found these all fell out. Ben says it was hard losing his eyebrows and eyelashes at first as he felt it made him look “more weird”. He’s more comfortable with it now but thinks other people would question his alopecia a lot less if he still had eyebrows and eyelashes. Beth agrees it was hard explaining to people why she didn’t have eyelashes.
Kayla, Hannah, Krista, Emma and Beth all had their eyebrows tattooed on. Others used make-up to fill in or give the impression of eyebrows and eyelashes, while Ben and Danny leave theirs as they are. Some of the young women talked about fashion trends for big and defined eyebrows, which often made them feel more self-conscious about their own. Rosie says eyebrows “frame your face” and she’s learnt how to draw and stencil them on. Although this can be time-consuming, Rosie’s not interested in eyebrow tattooing at the moment as she says she’s at an age where her face is changing shape and she worries they would look unnatural. Michael’s mum and his female flatmates helped teach him how to fill in eyebrows with makeup. Emily and Krista had lost some eyelashes but found they could use mascara to pull the lashes over the gaps. Beth wore “fake eyelashes” when hers had fallen out, but worried this “might be killing the new baby ones kind of coming through.” Emilie said she takes pride in her eyelashes but knows they may one day fall out again. You can read more about using makeup, tattooing and extensions for eyebrows and eyelashes here.
Not having eyebrows, eyelashes or nose hair, or only having a small amount, could cause discomfort. Danny’s eyes sometimes get red and sore, and his cheeks get sunburnt without the extra protection from having eyebrows. Emma’s nose hair fell out and she finds she often has a runny nose, especially in winter. When Beth didn’t have eyelashes, she found her eyes were sometimes swollen when she woke up in the morning.
Alopecia and body hair
Some people had lost all or most of their body hair, such as Rosie and Ben. Others had noticed bald patches on particular parts of their body. Krista’s arm hair fell out and although it’s now growing back, it’s in uneven patches and she finds it easier to shave. Becky says she’s naturally dark haired so would be able to see if she had hair loss on her arms. Emilie finds she doesn’t have much hair on her arms or legs and gets a lot of ingrown hairs. She has some scarring where she has tried to remove the ingrowth hairs and feels embarrassed about people seeing it. Arti thinks she might have some “slight patches” of hair loss on her arms, though she’s not sure if it’s related to alopecia or has always been like that.
Lots of people talked about gendered expectations and body hair. They often felt that women were expected to have long hair on their scalp but be hair-free on their legs and armpits. Because of this, some young women were pleased their alopecia affected their legs and armpits because it meant they didn’t have to shave or wax as much. Emily found it interesting that there are social norms about the “right” places for hair to be visible on women’s bodies.
Although not an area associated with growing hair, fingernails and toenails were mentioned. Emma has heard that alopecia can affect the nail, but hasn’t had this happen to her. Laurel says her nails are damaged which she thinks is due to alopecia.