Relationships with family members were often important for young people with alopecia. Many said their families were there to offer comfort and support in dealing with the emotional side of having alopecia.
Elizabeth says, “There have been times when I would cry over it and my mum’s just been there to hold me.” A few people said they found it hard to be around family when they were upset or worried about alopecia. Krista thinks she pushed away her partner, but sometimes talked more to her dad and stepmum.
Many people talked about their parents and guardians, but siblings were often an important source of support too. Kayla’s younger brother used to make comments when she changed her wig, but he’s more aware that it’s a sensitive issue now he’s older. Meghan’s siblings are a lot older than her and her sister in particular has always given lots of support.
Family were often very involved at the early stages of having alopecia. Sometimes family members, particularly their mums, went with young people to see the doctor and discuss treatment options. Family members sometimes helped with applying treatments and managing the visible appearance of hair loss (e.g. hair styling or helping them get their first wig). Annie X’s mum did lots of research about alopecia and paid for alternative therapies like homeopathy and hypnotherapy. Elizabeth’s sister is training to be a hairdresser and offered for Elizabeth to try out a new salon therapy.
Family members responded in a variety of ways to the young person’s alopecia. Some family members avoided talking about it, especially when it was first diagnosed. Imogen feels much of the family on her dad’s side “don’t even acknowledge” her alopecia, but says her mum and nan are “really supportive” and have “been my backbone throughout this.” Others were surprised and sometimes concerned at their family’s emotional responses. Michael thinks alopecia can “put a strain on not only the person, but the whole family.” Annie X remembers feeling embarrassed with her mum “bursting into tears” when the doctor said it was alopecia and they had to bring out another doctor to reassure her. Laurel recalls her mum crying as she shaved off part of Laurel’s hair, which “made it worse” for her. Arti didn’t feel she could talk to her family about how she was feeling and she found seeing a counsellor was helpful.
Some young people with alopecia found themselves comforting or supporting other family members. Hannah said, “A child can be more resilient than the adults and the adult might actually need the support.” Rosie remembers that her mother was very upset about her hair falling out at first but changed when she saw that Rosie wasn’t upset and now they “joke about it quite a lot.” Kayla’s dad lived abroad and was “a bit awkward about it”, but she thinks it’s difficult for fathers to know how to talk about “their girl’s hair”. Ben feels it was hard for his parents because they “couldn’t do anything to stop it” when his alopecia was making him unhappy.
A few people said that a stressful time at home, like the death of a grandparent, might have been a trigger for their alopecia. Quite a few people thought their alopecia might be “in the genes” and Hannah wondered if her own children might have it. Rochelle and Beth both had aunts who had alopecia. Emily thinks having a family history of other autoimmune conditions made her “quite aware” about the genetic background of alopecia areata.
Over time, many people felt their alopecia became a normal part of their family and home lives. Although it could still be upsetting at times, some people found humour shared with their family was a good way to manage the emotional side of alopecia.