(with kind permission of Irish Examiner https://www.irishexaminer.com/lifestyle/healthandwellbeing/arid-40250366.html)

'When I started losing my hair back in 2018, I felt like I was losing little pieces of me'

Her hair was her everything – and then it began to fall out. Mary Cate Smith on coming to terms with alopecia – and why she’s never felt as free

I’ve always had a complex relationship with my face. A malleable instrument of constantly-changing emotion, it seemed to express with greater intensity than other faces. Comedy was my safe space; funerals, a series of macabre quagmires. More often than not, my overactive visage betrayed my thoughts.

But my hair? My hair was everything. From the flaxen pigtails of my childhood to the Friar Tuck-inspired bob inflicted on most children of the 80s and the long, thick, lustrous hair I cultivated from my teenage years into my 20s. Who did I think I was? I was the proud owner of desirable hair.

Throughout the years, hair has played a major role in representing identity, social status and ideology. The Farrah Fawcett flick, the 'Rachel', Elvis’ quiff and Michaella McCollum Connolly’s super-sized 'hun bun' have all cemented their status in the annals of follicular history. We seethed when Becky with the Good Hair caught Jay-Z’s eye, cheered on civil rights with Angela Davis and her Black is Beautiful afro and feared the Neo-Nazi subculture of the skinhead. Polygamous Nigerian cultures had kohin-sorogun; the art of sending subliminal messages to a rival wife through hair.

Hairstyles can run the gamut from the personal to the political. We are emotionally hardwired to feel attached to our hair; it has within its tresses, energy, emotions and memories. “Don’t touch my hair,” sang Solange, “when it’s the feelings I wear.”

So, when I started losing my hair back in 2018, I felt like I was losing little pieces of me. I was diagnosed with alopecia areata, an autoimmune disorder where the immune system erroneously attacks the hair’s follicles. At first, shedding was minimal and intermittent — I could hide the patches with hairbands and hats. After the initial effluvium, my hair began to grow back; albeit different lengths and textures —but it was growing all the same.

Then, in 2019, my sister was diagnosed with stage-four breast cancer. My best friend and confidante, she underwent an aggressive bout of chemotherapy, followed by surgery and radiation. Her hair fell out. All of it. And whether by chance or by symbiosis, so did mine. In the space of about six months, I had one stripe of greying hair left on my head.

While my sister eschewed wigs in favour of brightly-coloured scarves and the softest bamboo hats, I felt wearing a wig was the only way forward for me. I made an appointment with Bernie Murray of Wigs Medical to get fitted for a wig. As someone who has experienced hair loss herself, she was a beacon of kindness and hope in a very dark time in my life. Murray not only helped me to choose the wig that was right for me, she also applied for the HSE medical wig allowance which entitles you to money towards a wig with a letter from your doctor (the sum varies from county to county and ranges from €440-€767).

Model, actor and activist, Amber Jean Rowan, started losing her hair when she was 15. At the time, she was a contestant in RTÉ’s The Model Agent. Pursuing a career so contingent on image whittled away at her self-esteem.

“It was a huge elephant in the room. I was never comfortable with anyone seeing me without my hairpiece.”

Ordinary tasks — jumping into the sea, answering the front door, seeing the milkman — had monumental meaning. If it wasn't the four, core people who had seen her hair-free, Rowan’s anxiety was “debilitating". Growing up, Rowan noticed the paucity of bald women depicted in the media. After years of sitting with the discomfort, she wanted to create an inspirational space where women with hair loss could feel seen. After opening up about her alopecia, women were coming to her describing the limits of having no hair. Can you really be a ballerina without her signature chignon? An air hostess without the perfectly-coiffured bun? Rowan wants you to know that you can.

“Your life can be just as great with or without hair. You might have more challenges along the way but you can do anything you want to do.”

In 2017, Rowan set up Hair Free Life, (hairfree.life) a website and online platform for people with hair loss. On it, she documented her own hair loss journey and provided resources from eyebrow tutorials to mindfulness tips. Her Instagram account @hairfreelife features bald, brave, beautiful women revelling in the freedom afforded by authenticity. Their beauty is in its abandon.

“I think of where my headspace was before and after Hair Free and it's wildly different. When I first set it up, the idea of walking outside with my hair off was still terrifying. Sharing pictures of me without nice makeup on was jarring. It was just doing it more and feeling that uncomfortableness more. And each time, it would just become less and less uncomfortable.”

Dr Dmitri Wall is one of the world’s leading specialists in alopecia and operates from HRBR, the hair restoration clinic in Blackrock, Dublin. Having qualified as a dermatologist in 2017, Dr Wall worked as a consultant in St. James’ hospital before taking up a post as a clinical fellow in Melbourne with pioneering hair loss expert, Professor Rod Sinclair. The emotional impact of losing one’s hair is pernicious, he says and far from superficial.

“We live in a funny society — there's so much focused on hair and how that forms part of you but whenever somebody has a problem or does something about it, it becomes more about vanity than it does about eroding someone's identity.”

Keen to dispel the myths surrounding alopecia, Dr Wall has established with the world’s top dermatologists, the National and International Skin Registries (NISR), a charitable organisation that looks at developing high-quality registries, with real world information about patients.

Alopecia affects around 0.1% to 0.2% of Ireland’s population, according to Dr Wall. That means between five and ten thousand people are experiencing hair loss at any given time in Ireland. Finding the right treatment is incumbent on two things, Dr Wall says; the extent to which your scalp is damaged and the emotional toll it has taken on your overall wellbeing. With alopecia areata, steroid injections can have a significant effect on regenerating growth. Medications called JAK inhibitors that suppress your immune system can also have success.

The role of stress in hair loss is a hotly-debated topic. There are multiple pathways to alopecia, says Dr Wall and genetics play a proportionately large role. Blaming stress for hair loss is a dangerous game, he says as there is no conclusive evidence to say it plays a part.

“If your focus is on reducing stress in your life, we live in a world where that's very difficult to do. People often turn a failed attempt to get their hair to grow back by looking after the stress as a failure in their own part, and that's not helpful.”

Dr Wall was instrumental in establishing SECURE Alopecia, an online hub where clinicians recorded the effects on COVID-19 on patients with alopecia. Their findings were pertinent.

“Some of the new medications that have been shown to work in alopecia areata have actually been shown, in combination with other medications to reduce time in ICU by up to a day.” We have reached an “exceptionally hopeful” time for people with alopecia, says Wall. Several pharmaceutical companies are at an advanced stage of rolling out hair loss medication and he predicts a 'revolution' of sorts.

Carol Johnson is the owner and director of Universal Hair Clinic in Dublin. A trichologist by trade, Johnson treats people with issues relating to the hair and scalp. Since the global pandemic hit, Johnson has seen an uptake in customers with hair loss, particularly from frontline workers.

Straighteners, curling wands and hair extensions can cause an assault on the hair shaft and lead to traction alopecia, Johnson claims. Extensions, weaves and wigs that sit tightly on the head can inhibit the scalp’s ability to breathe, she says.

Dust, dirt, sweat and pollutants can attach themselves to the scalp, blocking the pores — keeping the scalp clean and breathing is paramount, says Johnson.

“People tend to think ‘my hair will fall out if I go at it more'. It actually won't. So, touch your scalp, move your scalp, massage it and apply at-home treatments. A healthy scalp is healthy hair.” I thought the day I shaved my head would be momentous. I thought maybe I’d play Beyonce and I’d be dancing in between takes. I thought my girlfriends would be surrounding me in a coven of solidarity.

In reality, I was alone and it was quiet. It took a lot longer than I’d expected. Afterwards, I wanted to alert the town crier and send a wax-sealed note by carrier pigeon to my sister’s house but alas, I live in the wrong century.

Instead, I read my book, Betty by Tiffany McDaniel about a Cherokee Indian girl who wanted to be a pretend princess with cicada wings at Halloween without knowing that she was already a princess by her birthright. She didn’t need a crown to know she was worthy and neither do I.