This weekend was one of the most moving weekends of work I have experienced in the 3 years since I set up my business… but first, a little background…

I have been very lucky to work with the charity Alopecia UK – working to improve the lives of those affected by Alopecia – since the early summer of 2017 when my search for my first henna crown model lead me to meet with the AUK Charity Development manager, Jen Chambers. You can see how that unfolded in the blog post from her photoshoot here.

From that experience, I was then invited to be the henna crown provider at their 2017 national Alopecia Awareness Big Weekend event – in Birmingham. Unsure of what to expect, I was mostly emotionally invested in the logistics of how to set up to provide a thoughtful, respectful and empathetic service. Luckily, the official photographer for the same event was my good friend and familiar business collaborator, Louise Rayner. The weekend was a beautiful experience and you can read all about that in the subsequent blog post here.

Fast forward 2 years, AUK returned to me via an events management company who brought me in again as the official henna artist for the 2019 Big Weekend. The previous format I had used proved successful and well-received, and it seemed to me that I knew what to expect and how to prepare my setup – with the only significant difference being that the 2019 event was to be held a hefty 4-hour drive away in Bristol. Oh, and also the small matter of having a second event to attend on the Sunday of the same weekend. I estimated that although it would be a tight timeline, I should be able to make it to the Sunday booking, a wellbeing festival, and be able to indulge in a shoulder massage to recover (perhaps I was a little optimistic).

With this in mind I set off early on Friday, collecting my BBC henna crown buddy, Emily en route. I put the Disney playlist on and we were on our way, singing along, having impassioned feminist rants while the skies burst forth with biblical rain (no joke, we were travelling at 30 mph on the M5, windscreen wipers on the highest speed and visibility was still severely limited – an ark probably would have been more effective). We managed to arrive with plenty of time to spare and while I set Emily loose to explore on her own terms, I set up my station between Eylure and Ciara’s headscarves. My henna crown station was tucked in the back corner of a shared exhibitors room – which meant that the henna crown experience would be open to spectators.

I like to potter when I setup. And I tend to find that with each step of the way I become distracted by something else that I want to attend to, so I end up trying to do multiple things at the same time (word to the wise – this is a very messy and disorganised approach). On this occasion, I was really hating my backdrop. I use a photography backdrop and hang fabric from it to create some ambiance in my exhibition spaces. Usually it works without issue. In Bristol it fell over a number of times, the fabrics just wouldn’t drape nicely and it even broke! But it was too late to take it down, so it remained, held together with a significant length of tape. I decided that if I hated it, I would take it down on the second day.

There is always an element of anxiety for big events like this, but we exhibitors can sometimes forget that it’s nerve-wracking for the attendees too. My first crown was late. I panicked, but also she panicked. It was a simple misunderstanding and in the end we only lost 25 mins, but she was flustered and overwhelmed immediately. She gradually calmed as we worked on her henna crown… That is until the final moment when she was able to see her crown…

So here’s the thing. I often describe how my role as your henna artist affords me the privilege of meeting you under special circumstances. I know all my henna crown clients without hair, a wig, or any type of head covering. When I see you again with your head covered, I will struggle to recognise you. For me, when you appear in front of me with your scalp, I am simply overjoyed to have the opportunity to create my art on your beautiful canvas. I would not change any part of you for me to be able to work with you. On the flipside, my henna crown clients usually come to me when they have reached a level of acceptance of their life with Alopecia. Very often, booking a henna crown is the beginning of the final step towards self-acceptance, a celebratory landmark in personal development. So I always take photos of the completed henna crown from various angles to allow people to see their crowns without hindrance (mirrors just don’t cut it). The reactions are always incredible and inspiring – and the first crown for the AUK Big Weekend was no exception. Emotional and complex, it is difficult to explain the significance of seeing yourself in a way you have never seen yourself before. It may even be the first time you have been able to see the actual back of your head – because let’s be real, who looks at the back of their own head? When I show you your henna crown, you are seeing your scalp through my eyes, with a design that looks like it was always there, waiting to be revealed. If this view doesn’t align with how you are used to seeing yourself, it can be slightly overwhelming – but it isn’t a bad thing. It’s just new, to you. And that is how my weekend of henna crowns with AUK began.

The other fantastic aspect of my role as your henna artist is the conversation. I have learned so much from you, your lives, your experiences and the knowledge you share with me. From the journey of how you experience Alopecia, to how to parent teenagers (there is no definitive answer here), to re-entering the dating scene with Alopecia, and to the unexpected compromises made in becoming a full time carer when dementia affects a loved one. These conversations enrich my experience and empathy as your artist (and as a human).

The second day of the Big Weekend continued in a similarly moving and inspiring way with one notable exception. I met attendees who had travelled long distance from across the European continent (from Ireland to Sweden) to attend this UK charity event, I experienced the camaraderie of those who travelled with groups of Alopecian friends (fuelled by Prosecco), then those who attended with loved ones and also the self-sufficient, independence of those who prefer to travel alone, I learned the differing approaches to the use of wigs, I caught up on the past 2 years in the life of my previous henna crown queens, and also helped to experiment with some ideas for future tattoo designs for some of them.

Amidst all this I met my first Alopecian who had never been in public without her wig, who had the intention of pushing herself out of her comfort zone and had ambitiously booked a full crown session to take the huge step towards her end goal of self acceptance (if you know me, you’ll know that this was a lady after my own heart). Unbeknownst to me, she had arrived to her first ever Alopecia UK support event – the biggest one they organise throughout the year – and was, to put it mildly, utterly overwhelmed with everything she was experiencing. When you have lived with something for most of your life, beginning from childhood, you become highly skilled in the coping mechanisms that you have developed. If you’re lucky to find external sources of support, you will learn new coping strategies and glean advice from others’ experiences. But in many cases Alopecians are surprised to learn about the support system that Alopecia UK has built. Stepping into the fold of the AUK support is like walking into a beautiful welcoming hug. Some Alopecians take small measured steps into this hug, starting with lurking in the online support groups, before progressing to attending a small, local meet up. The more outgoing and gregarious personalities may just jump straight in at the deep end and attend one of the larger annual events after announcing their appearance in the online group. Either way, finding such amazing support can throw your current coping methods into a sharp and glaring contrast, forcing you to assess internalised mindsets that you maybe didn’t even know you had.

This was the exact circumstance under which one of my ladies came to me – 15 minutes late due to a very real and paralysing fear of what she had signed up to a few weeks prior. Her goal was to have the full henna crown. Her goal was to take that step for herself towards self acceptance. But what she hadn’t expected to feel was the flood of emotions triggered by meeting so many Alopecians like herself, and by seeing the huge swathe of heads around her representing all those who seemed to be charging forwards with their self acceptance, leaving her behind. In the throes of what may have been a prolonged anxiety attack, she was feeling demoralised by the notion that she was failing herself and to top it off, she didn’t think she would have the strength to remove her wig in a busy exhibition room in order to have her henna crown.

You see, that’s the thing with Alopecia, like anxiety: It does not discriminate who it may strike. Sure, there may be the odd genetic indication it could affect you, but it varies across a spectrum. So we had a gentle talk to ensure that we agreed that we would be achieving a henna crown that day, then we moved my [previously very much loathed] backdrop forwards to act as a privacy screen before I took a step away to allow her to garner the strength and energy to remove her wig. (I was so relieved to have the backdrop and firmly believe she was the reason I had persisted with it against my personal feelings.)

That’s another huge thing I’ve learnt from working with this amazing charity. One of the most upsetting and common responses to someone with Alopecia is “It’s just hair.” This phrase comes from the privileged experience of those who have never endured startling and unexplained hair loss. It is not just hair. It is the lack of control over your external appearance – that you no longer look like ‘you’. It is the bewilderment of why it could possibly be happening. It is the very real sensation that without hair, we become naked. It is cold and exposing. So removing a wig is much like going for a smear test, or a testicular exam with a qualified and experienced nurse; while you are there willingly and in trust, it does not mean you are ready to disrobe in full view of them. A degree of privacy and dignity is expected to enable you to feel comfortable. This is how it can feel for an Alopecian wig wearer to take a step towards a life without their wig. My sitting next to her while she removed her wig for the first time in front of a stranger was not necessary nor helpful for the situation. It was a nobrainer for me to step away and return when she was ready and braced.

Once we gently began her crown it developed swiftly and efficiently. She sat beautifully as we talked and the design appeared very smoothly and quickly. I confirmed that she consented for me to take photos to show her the design and it became the first time she had ever seen the back of her head. She was an absolute champion. We had the luxury of allowing her design to dry enough to cover with single ply tissue before carefully replacing her wig. As she helped me move my backdrop back into place (it didn’t fall or break again), I thanked her for giving my draped fabrics a functional purpose and she thanked me for helping her with taking a half step towards the goal she had originally planned. But when you are functioning through a fog of anxiety a half step is really momentous, and actually a legitimately huge “half” step. The anxiety in your head will tell you how you failed, how you disappointed yourself, when the truth is you DID achieve something and that is the ultimate success. I could not have been more proud of her.

The remainder of the day continued with ongoing inspirations, with the added opportunity to discuss some of my favourite feminist topics (repeal the eighth, fake abortion clinics, the role of the female as the caregiver, unequal standards of aesthetics between gender roles) and to learn more from each person as the crowns were placed on their heads. From the spunky grandma who had found a new lease of life upon discovering AUK after decades of coping alone (who I also credit for re-branding the henna tiaras to henna coronets), to the rock star who taught me that wigs allow her to express various extensions of her personality, rather than covering up who she is. It was extremely thought-provoking and emotionally fulfilling.

When my final coronation was complete and my kit was packed, loaded and ready to go, I took advantage of Bristol’s extensive food options and enjoyed a meal with Louise. We unpacked a lot of our mutual experiences from the weekend. I realised how much I had gained on a personal level with each new henna crown teaching me more about myself and bringing me to my own new levels of self acceptance (and even three days after the event I am still processing the effects while I type…)

Incidentally, if you were curious to know how my Sunday event went after my 4 hour drive in neverending rain on the Saturday night – I had to admit defeat and make the extremely difficult decision of cancelling. I was mentally and emotionally exhausted. I was definitely overly optimistic.

Now, as I sit here journalling those two days, my ultimate and long lasting take away is that the effects of Alopecia UK’s work are incredibly far reaching: Far beyond appearance management; Far beyond recommendations for wig suppliers, wig styling, headscarves, hats, lash and eyebrow make-up and semi-permanent make-up; Far beyond their most up to date medical research and treatments for cures. What makes Alopecia UK so special is the gentle human approach towards self acceptance, no matter where you are in your journey with Alopecia, or your age, or your background. The support they have nurtured is indiscriminate and empowering. and has had a powerfully positive effect on generations of Alopecians and their loved ones.

If you or anyone you know is affected by Alopecia, I highly recommend making use of their wonderful services. You can contact the fantastic team via the website, email or call them on their phone number. They also have a Facebook page and an associated, brilliant closed group for online community support. If you would like to help to support their work you can also volunteer, shop, add your voice to the fairer wig provision campaign, donate or fundraise.

And finally to bring a close to this emotional blog entry I would like to share this wonderful, award winning short documentary ‘Shedding‘ made by Alopecia UK. Please grab yourself a cuppa, get comfy and take 10 minutes of your day to watch.