Alopecia

The emotional impact of alopecia

Alopecia can affect people's emotions as well as in their physical appearance. Ben said there can be many “ups and downs” of hair loss and regrowth. Some of the young people we talked to found it especially distressing when their hair first started falling out and they were looking for a diagnosis. Others said they weren’t too worried when they first had alopecia, especially if they had been diagnosed as a young child. Kayla was 4 when her hair loss started and feels it has been a part of her life for as long as she can remember. It wasn’t until a rumour was spread at Rosie’s school about her having cancer that she started to feel self-conscious about her appearance. Those who had been living with alopecia for a while often felt it became easier to live with and some people found ways to feel more confident and accepting of their hair loss. Hannah has had alopecia for 5 years and feels “it was a massive acceptance journey”. A lot was said about the emotional side of living with alopecia in the context of family life, going to school and university, and having friendships and relationships.
People said there were many different emotions they had experienced about alopecia, such as:
  • shock
  • fear
  • sadness
  • isolation
  • anger and frustration
  • low self-esteem and knocked confidence
  • awkwardness and embarrassment
  • anxiety, stress and panic
Emotional responses to alopecia

The first signs of alopecia could be very difficult. Some people who were diagnosed when they were at secondary school or as a young adult described feeling panic, shock and worry about whether they would lose all of their hair and if it would grow back. Emily remembers how she “didn’t know what it meant – I thought ‘maybe I’m dying’”. Beth found it upsetting to see her hair fall out when she brushed or washed it. A few people described going through a “roller coaster of emotions” when they began to lose their hair and had to adjust to having more patches of baldness. Others who had been diagnosed at a young age said their alopecia didn’t have a big impact on them then. Grace says she was “blissfully unaware” at age 10 when she first started getting bald patches about what the implications could be.
For those whose hair loss became more extensive, the experience could make them feel “out of control”. Some opted to shave their hair as a way to “take back control”. Others became more withdrawn and self-conscious, which could have a big impact on their social activities and relationships with friends and partners. Emma remembers crying “about six times a day” when her hair started falling out for a second time whilst she was at university.
Dealing with reactions from other people

Some people thought a lack of public awareness about alopecia areata meant that they faced an added burden of having to explain the condition to others. It was often assumed by others that the hair loss was caused by chemotherapy (a cancer treatment which can cause hair to fall out). Annie X was 11 when her parents found a patch of missing hair on her scalp and she was devastated at first because “the only association I had with going bald was cancer”. Explaining that this isn’t the case could make people feel embarrassed or annoyed. 

Some people worried about going out and meeting new people because they weren’t sure how others would react to their hair loss or bald head. Grace finds other people sometimes tell her about their own (or a family member’s) experiences of cancer which feels “really awkward… I can’t tell you that I don’t have cancer now cos you’ve just opened up to me”. Sometimes other people made comments, stared or gave special treatment. Even if well-intentioned and there could be benefits to getting special treatment, young people with alopecia often felt “guilty” that others had misunderstood the reasons for their hair loss.
However, lack of understanding about alopecia was more of a concern for some people than others. This could depend on how visible their hair loss was or how accepting people around them were.
Confidence and self-esteem

Many people felt that when you are young, there can be a lot of peer pressure to “fit in”. Annie X thinks that going to an all-girls secondary school means there is even more pressure on appearance and she feels she is “surrounded by people who are always tossing their hair around”. A few people who had alopecia in their childhood experienced bullying from other children or prejudice from teachers and tutors. This could have a big impact on their self-confidence and how they felt about their physical appearance.
Most people we spoke to had times when they were worried about being judged in some way because of their alopecia, which affected their self-confidence and self-esteem. There was a mix of experiences and some people’s self-confidence had been more affected than others. Emily found that people would look at her if she was wearing a hat, scarf or cheap wig, or at her shaved head if she wore nothing. Although she is “fine with it” most of the time, she says there are “days when you want attention and days when you don’t”. Krista’s hair regrew after several months of alopecia but the experience still has a big emotional impact on her as she says it is always a worry that it might happen again.

Many people said there came a point when they started to feel more comfortable in themselves and worried less about what other people might think of them. Beth described there being both “peaks and troughs” but that, overall, “you just learn to live with it”. Some thought growing older and having had alopecia for a while helped them accept it. Whereas children in school could be “quite harsh”, those who were older found adults were more accepting. Emma has had alopecia for 6 years and says “it’s something you gradually get used to.” Ben feels that having alopecia has ultimately helped him develop his personality more and made him a more confident person.
Although some people still struggled occasionally, many had positive experiences of adjusting with time and wanted to pass this message on to other young people with alopecia. Michael says he lost all his confidence when he started losing his hair at age 13 but is “quite accepting of it now” because “as I've got older and matured, I've realised it's not that important”. Many also expressed their appreciation towards supportive family members, friends and partners, as well as others met through alopecia support groups, who helped boost their confidence and self-esteem.

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