Ben

Ben has alopecia universalis which began as a bald patch when he was age 14. He wasn’t too concerned at first and the hair regrew a few months later. Ben became more worried when he was 16 as another patch developed and continued to get bigger. He styled his hair to cover it but this became harder when two new patches developed during sixth form. He felt very self-conscious, especially as this was a time when he was becoming more interested in romantic relationships. Ben used to wear a hat and had a special tinted hair spray to cover the patches, though he had to be careful as the colour would sometimes come off on furniture. Ben eventually decided to have his head shaved and found this really “liberating” because he “took control of it rather than it controlling me”. Some stubble grew back on Ben’s scalp but also fell out over the following months. It was during this time that Ben lost all his body hair. Losing his eyebrows and eyelashes was especially hard and Ben feels it makes him stand out more. Ben thinks that his alopecia was triggered by suppressed feelings after the loss of his nan. 

Ben visited his GP a number of times. He had tests done which showed he was in good general health and so the doctors put his alopecia down to stress. At the age of 17, Ben was referred to see a dermatologist. He had an allergy test which showed that he was intolerant to gluten. He hoped that cutting this out might help his alopecia but his hair loss continued. Ben didn’t like that the doctors couldn’t give any certain answers about his hair loss. It was really hard to feel so out of control and like he was “gradually being worn away” by alopecia. His dermatologist prescribed some steroid creams but Ben found they were sticky and would clump together his hair. Ben was also offered steroid injections but declined as he was worried about scarring on his scalp. Ben’s parents arranged for him to see a trichologist (hair specialist) who gave a treatment of alternating topical solutions to put on his scalp. Ben doesn’t have much confidence in treatments for alopecia and using medications made him feel like there was something wrong with him. He also felt like it was a return to being younger, as he needed reminders and practical help from his mum with using some of the ointments.

Ben finds that many people he meets are interested in his alopecia and he enjoys some of this attention. He says that humour is a key way that he deals with having alopecia and it’s important to defining the boundaries of his friendships. He liked that his university flatmates already knew what alopecia was as he didn’t have to explain it, which he says is very different to where he grew up. However, Ben finds that he gets a lot of questions from drunk people and he doesn’t like it when people touch his head without asking. He sometimes feels a bit self-conscious that it’s possible to see when his head is a bit sweaty. Ben sometimes worries that girls will not give him a chance to get to know him because of his alopecia. However, he thinks that losing his hair helped him become more confident as he shows his personality more. 

Ben thinks that doctors should be more aware of the emotional and social impacts of alopecia, especially how hard it can be to hear that there are no answers or that treatments have limited success. His dermatologist mentioned about wigs, but Ben and his mum don’t think this would be right for him. Ben says that he would have liked more support initially, but is also appreciative that he had his parents and saw a counsellor at the hospice where his nan had been. He found it really valuable to speak to the counsellor rather than “bottle it up”. Ben is involved in supporting others with alopecia and uses social media, including a blog, to do so. He thinks it can be harder to have alopecia as a woman because bald men are more visible in society, though he finds that people are sometimes surprised that he is a young person.