Today marks exactly 10 years since my first head shave, which took place after enduring 5 months of hair shedding because of a second bout of Alopecia Areata (after a couple of small patches in 2007).  I thought I’d do a blog post to mark the occasion with reflections of my ten years with alopecia…

It’s a bit weird to have an anniversary of a head shave…yet each year when the 8th July comes around, I am taken back to 8th July 2010 and that very first head shave. At the time, it felt like such a big step to take and it was a day of mixed feelings; sadness, trepidation, embarrassment, relief, regret, to name but a few. I didn’t know that in years to come the memories and emotions of that day would remain so vivid in my mind.

Sometimes it would just be nice to blend in. Ten years on and one of the most frustrating things about having alopecia is how it makes me stand out from the crowd. Alopecia means that I look ‘different’. Having my patchy head means I stick out like a sore thumb and that can bring me unwanted attention at times, and can, for me, be one of the most irritating things about having alopecia. (Note: If I’m in a pub enjoying a beer, I don’t need strangers pointing out that I have no hair. It’s not something I am likely to forget!) 😉

Feelings change over time. In the early stages of having alopecia, I never thought I’d be ok with losing my hair. I thought that I’d always be sad and angry. I didn’t think I’d be able to live happily with alopecia or that it would lead to anything positive; I was wrong. It seems obvious now but feelings really do change over time.

It’s not all doom and gloom! Alopecia has taken me into a rewarding job, in which I help others who have faced the same struggles as me, and I believe it has made me a nicer, more accepting person. I am less quick to judge someone on their appearance, be it an unusual hairstyle, tattoo or another visible difference, something that perhaps I was a little guilty of in the past. Generally, ten years of having alopecia has helped shaped the 37 year old woman I am today and I think it’s actually had a positive influence on me.

Alopecia is not as uncommon as I once thought. There was a time when I believed I was the only person with alopecia. It really felt that way when I was first diagnosed and hadn’t yet met anyone else with alopecia. Obviously I couldn’t have been more wrong (apart from when I picked East 17 over Take That!). I’m not quite the weirdo I thought I was (well not because of my hair loss anyway!) 😉 Over the past decade, I have been lucky to have met hundreds of men, women and children with alopecia and engaged with thousands over the phone or in an online capacity.

Choices and decisions don’t need to be set in stone. When I lost my hair, I felt I had to make choices and decisions regarding how I would move forward with my hair loss. Should I wear a wig? Should I tell everyone at work about my alopecia? Should I try medical treatments? Should I give false eyelashes a go? Could I go to a client meeting without a headscarf on? All these questions and more. But reflecting back over ten years, the choices and decisions I’ve made have changed over time (and continue to do so). For instance, I am more open-minded towards wigs and make up (which initially I dismissed) but still don’t like to wear them every day. Early-on, I dismissed medical treatments that had little evidence of success but I am now open to medical trials should researchers want a patchy head like mine. There was also a time when I would choose to cover my head if meeting others for the first time or when meeting older people who I thought would make judgements on my appearance. I am now less likely to make a choice regarding how I present myself based on the possible reaction of others. Time passing, confidence increasing, attitudes changing, age and wisdom(!) have all contributed to my choices over the past ten years and I’m sure will influence my choices in the ten years to come.

Sometimes it’s just about talking down that inner voice (or listening to Dolly Parton!) I’m not sure if others with alopecia have found this but one of my biggest challenges has been the inner niggling little voice which alopecia seems to bring, telling me unhelpful things; ‘You’re unattractive’. ‘You’re not good enough’. ‘You can’t do <insert choice of activity> looking like that’. All these things are simply not true. But if you’re having a low moment, it’s easy to believe them. Alopecia has affected my mental health at times over the past 10 years and sometimes I have had to ‘have a little chat with myself’. Providing myself a gentle reminder that my alopecia doesn’t define me and doesn’t stop me doing anything I want to do. A mantra for us all to repeat when having a crisis of confidence. (Honest, it can work. And if repeating the mantra doesn't work, listening to Dolly Parton will!). 

Practice makes perfect. Ten years ago I lacked some skills that would have helped when I initially lost my hair. Practically, I didn’t have any make up skills. I’m still not hugely proficient in that area but I can now apply false lashes should I want to. I also struggled to deal with the very occasional insensitive comment that might come my way whereas now, after ten years of practice, they either bounce right off me or I have an appropriate reply!

Like me, Alopecia UK has come a long way in the past 10 years. I wish I’d got in touch with Alopecia UK sooner instead of struggling on for 18 months without the support the charity was able to offer. Things seemed to feel much easier once I’d met others with alopecia via Alopecia UK. The charity has come on in leaps and bounds in the past 10 years. When I first started volunteering for the charity at the back end of 2012, it was run by a very small group of Trustees and volunteers. Today it has a staff team of six, an office, a research committee and a website packed with information and advice. Back to when I was first diagnosed with alopecia, I wouldn’t have been able to ring the charity and talk to someone. Now, when someone needs advice or support, they can ring and speak to someone during office hours. A decade ago, the idea of Alopecia UK directly funding research projects seemed a bit of a pipedream. By the end of this year, Alopecia UK will have invested about £110,000 directly in alopecia research projects. We have hosted numerous events and supported hundreds of support group meetings. I am looking forward to marking Alopecia UK’s 15th birthday this September, celebrating the charity’s achievements and encouraging others to get behind the charity to ensure it’s around for the next 15 years.

I’m proud of myself. Anyone who knows me will know that I rarely give myself a pat on the back. Ok, occasionally I’ll be smug about a particularly delicious cooking success (most recently homemade Garlic Mushroom Arancini…hmmmm!) but it’s pretty much unheard of for me to be proud of myself. But as I am reflecting back on the past 10 years, I realise I am proud of myself. I am proud of how I have navigated the rollercoaster that is Alopecia Areata. And it really has been a rollercoaster – ups, downs and turns all the way. In the past 10 years, I’ve had to tackle the loss of all my hair including my eyebrows and eyelashes and my hair has very nearly fully grown back (twice!) only for it to fall out again each time. If I’ve learned anything in the past 10 years, it’s that there’s likely to be further bumps in the road thanks to the unpredictable nature of Alopecia Areata but I can cope with a bump or two…