Life Beyond Alopecia – The Journey to Acceptance

‘I have alopecia,’ I said nervously. ‘My hair began falling out when I was 12. This is not my real hair. It’s a wig.’

I woke up and reached over to check my phone. There were still no messages from my boyfriend Marco. I’d heard nothing from him for five days now. Ever since I’d told him my secret.

We’d gone out on a date and I’d decided it was time to trust him. ‘I have alopecia,’ I said nervously. ‘My hair began falling out when I was 12. This is not my real hair. It’s a wig.’

Marco had been so sweet and had got quite upset on my behalf about this unjust illness and when he heard the price of real hair wigs (tell me about it!) ‘I’ll take care of you,’ he said. He even told me he would like to buy me a wig one day.

Feeling happy and reassured, I kissed him goodnight, got out of the car and went back to my parents’ flat. But after that he ghosted me. Another boyfriend had left me because of my hair, or lack of it. But this time it hurt even more because I had really thought it was going to be OK.

This was me, at 19, still living in Italy, the country of my birth, and I’d had enough of not being accepted for who I am. For a reason I still don’t quite understand, I never got to the point where I actually wanted to end my life, but, believe me, in my head I wished so many times I could have stopped all the suffering I went through.

 

 Credit Photo: Marina Chichi

“People even shouted ‘Baldie!’ at me in the street.”

Being rejected by boys. Being dumped as soon as they found out this wasn’t my real hair. Always worrying people would work out that I was wearing a wig. Knowing people were gossiping about me – I was one of only two bald adolescents in a town with a population of 60,000; it seems like a lot of people, but especially in a small town in south Italy in the late 90s, everyone kind of knew everyone and young people were bored. We didn’t have Tik Tok yet!

I was often bullied on the street, with kids pulling off my hat or headband, especially at the beginning when I had patches of missing hair and I attempted to cover them with whatever I could. People even shouted ‘Baldie!’ at me in the street.

So I packed my very few belongings and made my way to London, which looked so liberal and unconventional to me.

I had it in my head that it would be a place where I would finally be accepted. And I was proved right. I soon discovered that in London nobody cared what I wore and if this was a wig or not. I knew I could go to the supermarket wearing pyjamas if I really wanted to (practically a crime in Italy!) and nobody would say a thing.

With time, my confidence grew. After a few years, I gathered the courage to go to work wearing wigs of different colours and styles on different days of the week. I began to express myself through colourful clothes and bold accessories. I didn’t realise it at the time but the seed of my future business was beginning to take root.

 

 

This year marks the 20th anniversary of my arrival in the UK and of my rebirth.

It has been a slow process but those tiny, precious roots grew and flourished, and I am now the owner of Kodes, a thriving jewellery and accessories brand I started in 2015. At Kodes I design and make jewellery and accessories for people who like to express themselves, who like to be bold and quirky and make a statement.

My range includes hand-painted wooden geometric pieces, necklaces and earrings made with silicone beads, and Art Deco style acrylic geometric jewellery. In addition to glasses chains and headwear, I have a well-being range of aromatherapy jewellery, candles and essential oil rollers. Kodes was born from my need to express my creativity, something I couldn’t do through my hair, because of my alopecia, an autoimmune disease that causes partial or total loss of hair and body hair.

 

“Jewellery became my outlet for expressing myself. The bigger the better!”

Unlike other teenagers and young women, I never got to go through the pink hair phase, braids, extensions, permed or crimped hair… And even today, I can’t follow all the hair trends, for example, I can’t have a high ponytail without constantly panicking that part of my wig is showing. You would think a ponytail would be the least stressful hair style. Not for us!

Instead, jewellery became my outlet for expressing myself. The bigger the better! And in 2019, when I embarked on a rebranding journey for Kodes, I discovered that the big WHY behind my jewellery and accessory brand was exactly that: to create statement pieces anyone could wear to express their creativity and personality. For example: a spot colour to wear on your boring work uniform; a bold and bright piece to wear at an interview where you want to show you are serious and professional but still have personality and individuality; or you love purple so much, you’d cover yourself in it head to toe but you can’t, so you’ll pick that one purple necklace to add even just a touch of your favourite colour.

 

“The journey to where I am now has not been easy.”

When I walk past a group of teenagers laughing, I still have to remind myself that they’re not even noticing me, I’m definitely not their target; I still take the trauma of the street bullying and the trauma overall with me.I’m still unable to go bare-headed in the town I grew up in, I still fear I’ll be ‘the only bald in the village’, and that the gossip and the stares will be non-stop. Acceptance is still a destination for me and not a past stop on my road to happiness, but I am in a much better place now.

Fundamentally, alopecia affects your confidence and this can seep into all aspects of your life. I work very hard every day on making sure this doesn’t affect Kodes, but at times I might still fall into the imposter trap and avoid contacting a potential stockist, thinking: ‘My products are not good enough for that store’. Thanks to working with my sales coach, Therese Oertenblad, I have been pushing those thoughts back by just throwing myself into the sales pitch and reminding myself: ‘No shops have ever told me that my creations are not good enough!’.

I haven’t been alone in this journey of course and I have much to be thankful for, starting with therapy.

Thanks to CBT, I have changed a lot of my limiting beliefs and understood that most of the time people around me are within their own mind, with their own insecurities and problems and not everyone in the room is even remotely noticing or caring if I have hair or not. But it’s the support of my fellow alopecians who I have met through Alopecia UK, a UK charity supporting anyone affected by alopecia, that has made it possible for me to make huge leaps in my journey towards acceptance. Going from being the only bald in the village to a room full of women and men just like me has been mind-blowing and one of the best feelings I have had in my life.

 

“I have become braver and in 2020 I appeared on social media for the first time without a head covering.”

My jewellery and accessories brand Kodes has been the best channel for a lot of the issues caused by my traumas though.

I used to spend a lot of time ‘in my own head’, being so worried about my looks, what people thought of me, etc. The need to be accepted by boys unfortunately extended to the need to be accepted by absolutely everyone. It was tiring being in my head. I still have some of these thoughts, but they no longer rule my mind and take up all the bandwidth.

Without planning to, I have found myself channelling all the energy that the support of CBT helped release into Kodes. This became easier once I managed to stop most of the excessive thinking. When you run a business, you have so much to learn and it’s the most exciting journey.

As a result, I have become braver and in 2020 I appeared on social media for the first time without a head covering. I realised that I had an opportunity to represent and champion diversity, support the fight against body shaming, and just include people like me into the fashion conversation. All this, together with raising funds for the charity Alopecia UK through sales of my products, has given my business a deeper purpose and made me feel I can truly be useful to the world out there.

The journey to acceptance is still long, though. I am getting support through EMDR therapy and I’m hoping to really get to the root of my trauma. I have also committed through a fun workshop hosted by my coach Therese to ‘just sell’, rather than getting lost in all the limiting beliefs that come from the lack of confidence.

I will continue to champion diversity and I am grateful to this beautiful country for the possibility it has given me, to stop seeing my illness like something I should hide, but more like a unique trait that makes me who I am, that drives my creation process and something I should be proud of.

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About The Author

Morena Fiore / Designer Maker at Kodes

Morena is the Designer Maker of Kodes, a statement jewellery and accessory brand she founded in London in 2015. Having had Alopecia Universalis (an illness which causes all your hair, eyebrows and eyelashes to fall) since she was 12 years old, Morena started Kodes from the need to express herself through jewellery, something she realised she had been doing for years, as a way to make up for not being able to express herself through (the lack of) her hair. Kodes was also born as rebellion towards fashion homogenisation, something she has experienced throughout her upbringing in Italy. Looking for a more diverse society, where anyone can wear whatever they want and anyone can be whoever they want, Morena left Italy in 2003 and has found in London exactly what she was looking for.

Website: kodes.me.uk

Instagram: kodes_accessories

LinkedIn: https: morenafiore

 

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