Most people we talked to had seen doctors (GPs and/or dermatologists) about alopecia more than once. People didn’t always see the same doctor each time, sometimes because they had moved address (such as going to university) or out of choice (if they found a doctor unhelpful). Others had only been to see GPs and dermatologists once or a couple of times at the start of their hair loss. Part of the reason why some people didn’t go back to their doctors was because they didn’t feel much could be offered to them to stop the hair loss or help regrowth. Emily was told that her hair loss would stop and regrow in a year, but in fact it continued and became more extensive.
For those who had alopecia most of their life, their parents had usually first taken them to see doctors. Meghan’s mum took her to all her appointments growing up. She says it was “nice to have her through the whole process” and provided a “stable situation”. Some people, like Annie Y, hadn’t been back to see doctors for alopecia since they were young. Danny hasn’t been back to see a doctor about alopecia after a diagnosis was made and his general health checked when he was a toddler. Those who continued seeing doctors usually went on their own as they got older, especially if they lived away from family. They often talked to their family members about what had happened at appointments though. Some people liked having another person with them at their medical consultations. Most people went to a general dermatology clinic, but some had been to ones specially run for children and young people (paediatric dermatology). A few people had been to ‘transition clinics’ run for teenagers to help bridge them between paediatric and adult dermatology.
Seeing doctors and trying treatments was an ongoing part of having alopecia for some of the people we talked to. If a young person gets on well with their doctors or nurses and feels there is progress being made with hair regrowth, frequent appointments can be reassuring. Rosie isn’t having treatments currently but likes seeing her dermatologist occasionally for a ‘check-up’ and update. Michael sees his doctor every three months for steroid injections to help his eyebrows regrow. For others, repeat visits to the doctors became tedious and gave no new information or treatment options that would be helpful. Meghan thinks going to the dermatologists at the hospital for treatments added stress in her life. Grace explains that seeing a new doctor usually involves being told “the gumpf that I’d heard a million times about the treatment, like ‘this is not really treatable.” It can be frustrating going back to the doctors and either trying treatments all the time or being told there are no treatment options to try, as well as:
- expensive with prescriptions costs, private medical care and travel costs to appointments;
- time-consuming and some people required time off school, university or work for appointments;
- emotionally and physically tiring.
Some people didn’t see a doctor frequently but would go if their alopecia returned after regrowth or became more severe, for example if they had more hair loss or it started to affect new parts of their body. Others who still had alopecia didn’t go to see doctors about it anymore as they didn’t see much point in it. Elizabeth says she has “given up” with seeing doctors and trying medical treatments. Annie X prefers alternative therapies and a holistic approach with attention to diet over conventional medical treatments like steroid creams as “it felt wrong” to be “putting chemicals on your scalp.” However, as Rochelle was shocked to discover, some products sold as ‘natural’ and ‘herbal’ actually also contain steroids. Some people said they didn’t want treatments, but saw their dermatologist for NHS-entitlement wigs.