Many young people had advice based on their own experiences to give to others with alopecia. The main messages were:
- it’s okay to be upset about alopecia, but try not to let it rule your life;
This was a key message given by lots of the young people we talked to. Grace says alopecia is about more than “just hair” and that it can have lots of impacts on emotions and mental health. Many people felt strongly that you shouldn’t stop living your life or hide away because of alopecia. Krista feels she missed out on times with her daughter because she was so upset. Beth says, “You do go through peaks and troughs with it” and there may be points when it’s harder to cope, but “try not to let it bother you that much, even though it’s a lot easier said than done”. Many people talked about acceptance being easier with time. Having alopecia used to make Kayla feel “like there’s something wrong with you”, but she feels it’s less of a worry now she’s older. Laurel says it’s “nothing to be embarrassed about” and Ben has the motto of “you define alopecia, don’t let it define you”.
- get support from the people around you;
Some people said they felt very alone when they first had alopecia and that talking to others around them had helped. Family, friends and partners were often mentioned, but work colleagues and teachers or university staff could also offer support. Arti wishes she had told people about having alopecia sooner as she thinks she would have had more support from the start. Some people said to be aware that other people may not immediately understand about alopecia or may say the ‘wrong’ things, even if they’re trying to help. Becky thinks it might be a good idea to talk to people around you to explain that “there’s certain things that they can’t say to you” and let them know what kind of support you want.
- consider talking to other people who also have alopecia;
Many people found that online and face-to-face groups for alopecia were an important source of emotional and practical support. Support groups played a big role in helping the people we talked to feel less alone with alopecia. Some of the young people preferred speaking to others their own age, but it could also be helpful hearing the experiences of someone different to them. People said there was also a lot of helpful information that can be shared between those with alopecia. Many had learnt about types of wigs and how to take care of them through online groups. Grace first heard about entitlements on NHS to reduce the cost of wigs through the Alopecia UK charity.
- try different treatments if you want to, but don’t feel like you must;
The decision about whether to try treatments for alopecia areata, which ones and how long for was a personal choice. Some people hadn’t tried any treatments or hadn’t done so for a long time. Others thought medical treatments, alternative therapies and shop bought products were worth giving a go and some had good results from using these. Lots of people talked about there being limits to the treatments they would consider. Meghan stopped getting steroid injections when she no longer felt comfortable with the treatment. Emma thinks something like minoxidil might be worth trying for a small patch of alopecia areata, but to be true to your own limits on what you are willing to try. Kayla thinks it was best for her to learn “how to live with it” rather than focus only on trying to stop or reverse the hair loss.
- be confident about who you are and how you look;
Many people talked about alopecia being only one part of them and their appearance. Elizabeth talked about all the other things that make her who she is and not just someone with alopecia: “I am a singer, I am a musician, I hope I’m a nice person, I’m a caring person, I’m compassionate.” Annie X thought alopecia could be a “barrier between who you are and who you think you are and who other people think you are”. Annie Y says, “As long as you just find something that you’re comfortable in, whether it’s a wig or a bandana or even if it’s none of those things, just do whatever you want and then it will be fine.” Ben found shaving his head was hard to think about at first but made him feel better afterwards. Imogen feels her experiences of alopecia have helped her become “this positive person that I am” and that she’s found a way to “embrace” it in her life.