Alopecia

Sources of information and support about alopecia

Many young people we talked to felt very alone when they were first diagnosed with alopecia. Some said their doctors gave them little information or emotional support and they looked for information themselves in other ways. The main source of information and support was other people with alopecia. Other sources of information and support, both practical and emotional, include:
Types of information about alopecia

Many said hearing other people’s experiences with alopecia was a key source of information and support for them. Emily also read academic research papers about alopecia and treatments. Danny’s mum looked online for information but he has never looked himself. Emilie has looked up a few things online, such as treatments or other people’s stories, but says she’s “not one for sitting hours on end looking at my condition”. A few people said they had searched for stories of famous people who had alopecia, which helped them to feel better about themselves and the public profile of alopecia.

People had used the internet to find information about:
Reading about and talking to others with alopecia

People shared stories online (using forums, discussion groups, social media, blogs and charity websites) and in person (including groups and days out run by the Alopecia UK charity). Some people read other people’s stories on forums without posting themselves. Rochelle and Becky both find it helpful to read other people’s blogs to see whether others felt the same way as them. Becky says reading these blogs help her to worry less.
Online videos were mentioned by some people. Rochelle and Hannah both used YouTube videos to learn how to manage their hair loss, find products and wigs. Annie X and Rosie watched YouTube videos on different ways to apply makeup.
Some people felt there were particular benefits of online information and support:
  • finding it easier to talk about emotions
  • feeling more comfortable about talking to others than face-to-face
  • having access to support any time of day or night and especially on ‘bad days’
  • feeling part of a community
  • being able to access people all over the world and getting information about treatments in other countries
Others said they would rather meet and talk in person. Rochelle says that “especially in the black community, people love to talk about hair and what you do with your hair and how you do it”. She gets advice on products from other people at hair salons. 

Many people said knowing about and meeting others with alopecia helped them feel less alone, especially as many thought of it as a ‘hidden’ condition. Grace and Danny both met and made friends with other people their age at events organised by Alopecia UK. Arti goes to her local support group. Before attending the group, she said she had no idea that there were people living in her area with alopecia.
Many people talked about wanting to raise awareness about alopecia because they found that other people often don’t know much about it. Sometimes other people had assumed that their hair loss was caused by chemotherapy treatment for cancer. Some young people with alopecia tried to raise the public profile of the condition through a variety of means, such as social media and blogging, giving assemblies at school and fundraising for Alopecia UK. Hannah makes online videos about her experiences of alopecia to help others. Ben set up a Twitter account  to let others know they could contact him for support.
However, some people found it scary when they thought about making their alopecia public and visible to others. Annie X and Beth both said they didn’t like photos of themselves on Facebook because it affected their confidence and they sometimes compared themselves to others. Krista didn’t talk about alopecia on Facebook because she didn’t want people to feel sorry for her.
Not everyone wanted to talk about their alopecia to others. Some felt it was unnecessary. Annie Y has had alopecia since she was three and always wears a wig. She doesn’t tell many new people she meets and only when she knows them well because she doesn’t want to be known as “the girl with a wig”. Meghan doesn’t feel her alopecia is severe enough to need support from anyone else apart from family and friends. She didn’t think it would be helpful for her to “sit and talk about feelings”. People’s approaches to talking about alopecia sometimes changed. Ben said he used to ‘bottle up’ his feelings about his alopecia but is now more open about it. 

A few people felt talking to others might make them more upset. When Krista’s hair fell out rapidly at the age of 22, she didn’t want to talk to anybody about alopecia but now she thinks it would have helped if she had. Beth had alopecia patches as a toddler which returned again when she was 11 years old. She says she found little support online that she could relate to. Sometimes people disagree with other people’s views on forums which can cause conflict and upset, as Imogen found when she got negative feedback from others about the views she expressed on the triggers of alopecia areata. A few people said they felt worried or daunted about talking about their feelings in a group of strangers and Emilie says she would prefer it if it was a small group.

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