Beth
Beth has had different kinds of alopecia areata for most of her life. She found it most difficult to lose all her hair, including eyelashes, at the age of 20. Beth describes her feelings about having alopecia as involving both peaks and troughs.
Beth has had different kinds of alopecia throughout her life, beginning with two patches on her scalp when she was a toddler. Since the age of 11, Beth has experienced alternating periods of hair loss and regrowth. Beth found that she could cover the patches with different hairstyles and headbands during secondary school. However, this was not possible when she lost all of her hair, including eyelashes and arm hair, at age 20. Beth says losing her eyelashes was especially tough as her eyes would become swollen and other people often noticed there was something different about her face. Her eyelashes have grown back and she has regrowth of hair on her legs and arms. For the last 7 years, Beth has worn wigs and she had her eyebrows tattooed on. Beth doesn’t feel that her experiences fit neatly into one category of alopecia areata as she has changed between areata, totalis and universalis. Beth’s doctors and her mum think that stress is the reason why she experiences hair loss, although Beth isn’t convinced by this being the explanation.
Beth was referred by a GP to see a dermatologist about her alopecia. She was prescribed minoxidil to rub onto her scalp and she bought special hair growth shampoos to try. These treatments didn’t help and since then, she’s only returned to the dermatologist whilst at university to get a prescription for NHS wigs. However, because this involved long waits, she prefers now to buy her wigs herself. Beth tends to order her wigs online as this gives more time to think about options whereas there can be pressure in a wig shop to decide on the spot. She also thinks that the wigs available in the shop are more suited to older women. She says that it’s hard to find wigs at the right length so that they will last without the hairs getting damaged too quickly. She prefers longer, curly wigs as these are like her natural hair style and she opts for wigs with fringes to cover the cap band. Beth says that the popularity of hair extensions means that people are less likely to think it unusual if she changes different hair length wigs from one day to the next. Beth finds that one downside is that the wigs can be itchy and hot; for example, this is an extra thing to think about in relation to hobbies such as going to the gym.
Beth describes her feelings about having alopecia as involving both peaks and troughs. She says that losing your hair can make you feel very vulnerable and there are occasional times when she feels low. Beth had a close group of good female friends at school, but she found having alopecia much harder to cope with when she moved to university. Being in halls was especially difficult as she felt unable to take her wig off whenever she wanted to. Beth finds that romantic relationships can be hard as she can be affected by alopecia-related insecurities. Overall, though, Beth copes well with alopecia and she feels strongly that you can’t let alopecia get in the way of doing the things you want to do. She adds that having alopecia means that you’re experienced in it, you’re not actually defined by it. She tends to look online when she’s in a really good place about it and she’s particularly interested in knowing if there are clinical trials for treatments going on. Beth has looked at a number of blogs about alopecia but finds these can be tricky to relate to as many are focused on individual experiences of quite short-term alopecia. Beth adds that self-depreciating language used by others with alopecia can also be upsetting to read as it can feel like a direct comment.
In Beth’s experience, the most helpful professionals for advice and support have been the owners of the wig shop she used to visit whilst at university. Beth’s advice to other young people with alopecia is to talk to others and not let it stop you from doing anything that you want to do. She feels that it’s important to recognise that there can be impacts on the family of a person with alopecia and that relatives may need emotional support too.