When American actor Will Smith slapped Oscars host Chris Rock for making a joke about Smith's wife Jada Pinkett Smith's bald head at the movie industry's ceremony on Sunday night, a global spotlight was put on the hair loss condition alopecia.
Paddy Pender says that the support group Alopecia Ireland has been inundated with media enquiries about alopecia following the incident. "A scripted joke about alopecia is not right and it highlighted the ease with which some people feel free to comment on others without taking into account the knock-on effects on individuals," says Pender, who lost her own hair in 2011.
American actor Pinkett Smith has spoken publicly about her experience of living with alopecia in the past, and following the Oscars incident many others have come out in support of her. US congresswoman Ayanna Pressley tweeted about the daily psychological toll of having alopecia. "Our bodies are not public domain. They are not a line in a joke – especially when the transformation is not of our choosing. Let's talk about what it's like to live with alopecia – the deeply vulnerable and difficult moments that our families see … those who hold us down and support use when we're at our lowest points," tweeted Pressley.
The UK charity Alopecia said that dealing with unwelcome remarks and being the butt of jokes is sadly all too real a part of having alopecia. “This just adds to the distress and challenges faced by people with alopecia,” says a spokesperson for the organisation.
'Some people with alopecia feel guilty because people assume that they have had chemotherapy for cancer and others really embrace it'
Pender says that there is still a stigma around looking different. “You can become a target of someone else’s jokes and if that happens on social media, it can be internalised and undermine people – pushing them further away from seeking treatment.” She adds that she hopes that the staff in schools and colleges is available to support children who suffer from alopecia.
Speaking about her personal experience, Pender says that it was “a roller coaster of emotions” when she got alopecia but also was also an “eye opener” on how we view others.
Initially, she chose to wear a wig – and still does in work – but recently decided to stop wearing it the rest of the time because it was uncomfortable. “Since making that decision, I feel I am more relaxed and more at peace. Neighbours and friends have grown used to the new me and are wonderful,” she explains.
Eithne Hand, poet and theatre/radio producer explains how all her hair fell out when she was 43 – nine months after the unexpected death of her mother. "When I saw the first patch, I just felt dread. There is a history of alopecia in my family so I knew what was going to happen and after seeing two consultants in a week, the answers were the same: 'prepare to lose it all, and go out and get a good wig.'"
Hand, who was Head of RTÉ Radio 1 at the time, decided to shave her head. "I stayed bald for about seven years and mostly got used to it. But now and then I'd just weep. I missed my hair – the feel of it in the bath or shower, its texture and weight, the normality of it."
The Oscars incident reminded her of when she was having lunch with a male colleague one day and the waiter said, “I’ll get that for you now, Gents”.
“My friend lit on him angrily, pointing out that I was not a gent. I was proud of him, and sort of mortified,” she says.
Hand explains how in 2012 some of her hair started to grow back without medication and so she opted to add hair extensions. "I went to an amazing specialist hair salon, TC Hairworld in Stillorgan, and it's hard to express the relief of being able to walk out of there with something equivalent to hair," she explains
“Now, post- pandemic and the stress of Covid was pretty tough on people with hair loss – and having turned 60 – I’m trying to decide again about funky grey or pink wigs or micro-pigmentation which is like a tattoo on my scalp,” says Hand.
Dr Dmitri Wall, consultant dermatologist at Hair Restoration Blackrock and assistant professor at the Charles Institute, UCD School of Medicine, says that our hair is such a strong part of our culture and identity that most people don't realise the impact hair loss can have.
He says that people with alopecia react in different ways to having the condition. “Some people with alopecia feel guilty because people assume that they have had chemotherapy for cancer and others really embrace it. For children who have it from a young age, it can become part of their identity. Often, change – whether its hair growing back again or being lost again – impacts people more,” says Dr Wall.
'It's useful for children to see prominent and high achieving people like Jada Pinkett Smith who have alopecia'
He says that the most important thing for friends and family can do is to lend a sympathetic ear. “Listen and understand what upsets them and give them the support they are looking for. And remember that alopecia doesn’t change the person you are. I think we are slowly moving towards a society that recognises that you can’t discriminate against people by how they look.”
As a health professional, Dr Wall stresses the importance of providing people with science-based information about their condition and possible treatments. “People can be vulnerable and I’ve seen people being taken advantage of with inappropriate and exceptionally expensive treatments that don’t work.”
He adds that celebrities and sportspeople with alopecia can be good role models for others, such as Italian referee Pierluigi Collina and Scottish television presenter and former model and actress, Gail Porter.
"Knowing that you are not the only one suffering with this helps. And it's useful for children to see prominent and high achieving people like Jada Pinkett Smith who have alopecia."
Alopecia affects about one in 50 people over a lifetime and can vary from patches of hair loss to complete loss of hair, eye brows, eye lashes and other body hair.
The Irish support group is alopeciaireland.ie