You never know what cards you’ll ever be dealt with in life.

It’s easy to wonder whether you may have brought some conditions on yourself…like if I had put myself first a little more then maybe I wouldn’t have added to the stress which they say can trigger Alopecia Areata. But in all of the articles I have read about autoimmune disease, I have yet to see anyone identify a specific reason as to why anyone’s immune system essentially attacks its own body. Of course there are theories such as environmental factors, genetics and medications but the overall cause remains unknown. Whilst some autoimmune conditions may not be life threatening, they can very much be life limiting both physically and psychologically. 

If you aren’t familiar with Alopecia then the term simply means hair loss, and it can present itself in different forms. Alopecia Areata is defined as hair loss in patches but there are also more acute types of Alopecia which Alopecia Areata can lead to. Alopecia doesn’t discriminate – anyone can be affected, at any age and any point in their lifetime.

I remember the day I ran down the stairs to my Mum in a bit of a panic after finding my first patch whilst drying my hair when I was at Secondary school. My hair grew back but that was the start of the cycle…slowly losing it and trying to hide it, all the way through my teens and into my 20s. I had a slight reprieve at 27/28 where I was delighted with my full head of hair and the thought of going to a salon to get it cut was somewhat of a novelty. The Alopecia ended up coming back and whilst my hair was fairly long, it was only a matter of time before I found myself wearing hats regularly, and here I am still wearing them a fair few years later. 

Thankfully, I’ve been blessed with a head and face which suits hats (even if I do say so myself!) but it doesn’t make it any easier to deal with; and when I’ve been out a few times on a Saturday night, there’s been the odd time where drunken strangers have thought it funny to whip it off my head and run away with it. I vividly recall this happening to me on Union Street during a night out in Plymouth several years back and my best friend who I was with, legged it up the road after someone to get it back. Luckily, she was (and still is) a very seasoned runner and the guy didn’t get too far before she caught him up and retrieved it…and that’s with wearing heels and keeping her handbag intact…if that’s not friendship, then I don’t know what is! Similar instances have also happened in more recent years and as I’m stood in a busy place trying to hide my head with my arms, the embarrassment starts to grow.

As the hair loss has continued, the more anxious I have gotten about going out at night, which has then grown into getting a little anxious in busy spaces generally. As hard as it can be at times, I push through it, but there have been times whilst watching football matches I have placed my hand over my hat whilst everyone around me is celebrating after a goal has been scored, just in case someone accidentally catches it and tips it off my head whilst they are in the moment – there’s a constant feeling of being on edge.

There’s also the times when I’ve been out with friends and the Security team on the door, not always politely, have asked me to take it off before entering bars, at which point I have had to justify my reason for wearing it. On some occasions, I have been refused entry – a bit of an awkward situation you can find yourself in with your friends on Saturday Night out but then the squad manage to talk those on the door around. There is, however, the most anxious experience of all – getting through airport security. One traumatic experience in Lisbon airport was enough to put me off for life but since then, I have translated it into the appropriate language and written it on a piece of paper so they can read it, rather than going through the rigmarole of having to explain it through a language barrier. There have also been times where I have been escorted to a private room so they can check I’m not hiding anything underneath my headwear, but this just leaves me with a slight feeling of shame. 

Over the last 12-18 months, the amount of hair I’ve lost has been quite considerable but as there is no definitive cure or cause, other than my immune system mistakenly attacking the hair follicles because it registers them as ‘foreign invaders,’ I had put it down to stressful events which were occurring at the time and maybe not taking regular time off work, until more recently where I was diagnosed in being significantly deficient in B12 – an essential vitamin for hair loss and hair re-growth. Some of the symptoms I had been experiencing for some time and so it is possible that this has exacerbated my hair loss over the course of a few years…but I guess I may never truly know.

For anyone who has lost their hair for whatever reason, they will know what I mean when I say you lose yourself. Your hair is a part of your identity and so when you start to lose your sense of identity, it can leave you feeling very lost. Mirrors have become less of a friend as accepting the reflection staring back at me still leaves me feeling uneasy. Photos are a rarity and so the numerous landscape photos I take to ensure I never lose a memory are heavily relied upon. 

I was recently reading an article written by Matt Lucas a couple of years ago who, at the age of 6, was diagnosed with Alopecia Universalis – total loss of hair all over the body including eyebrows and eyelashes. Some of his experiences resonated with me as they are similar to those I have written about here, but he also goes onto say that if he had hair, he wouldn’t have made his big break on ‘Shooting Stars’ and his Alopecia has helped to mould his career into what it is today. I admire anyone who has been able to flip the condition on it’s head (no pun intended!) and fully embrace it. 

2020 has been, and continues to be, a challenging time for everyone but it has enabled time to reflect and ponder over what is really important. I would be lying if I said I hadn’t delayed progress in some areas of my life as a result of my Alopecia, or have done less of what I love because of it; but then all of a sudden one day you realise how quickly time is passing by, and if there is one key take-home message from this year then it is that life is too short to not fully live the life you once imagined, because you never know what is around the corner.

Some autoimmune conditions still have very little awareness in comparison to the number of people who are experiencing them – Alopecia is just one of them. Not talking about what we’re going through can have more of a negative impact than anyone realises. We should never apologise for being ourselves, and never apologise to others for their misunderstanding of who we are – we are who we are, I am who I am. 

Some conditions may be harder to live with than others but to anyone reading this experiencing anything similar, it doesn’t impact on your other qualities like being a loyal friend or a supportive family member, or being a loving girlfriend, boyfriend, husband or wife. It doesn’t take away from how talented you are and it shouldn’t impact on your ability to believe in what you can achieve. I’m not suggesting it was at all easy, but Joanne Rowsell Shand, Olympic Cyclist and Alopecia UK Ambassador who lost all her hair at the age of 10, didn’t allow it to interfere in her dream and journey to winning Olympic Gold Medals in the GB Olympics 2012 or Rio 2016, amongst other accolades. 

For anyone trying to manage Alopecia or any autoimmune condition then you are certainly not alone, and to those who aren’t, there may be friends and family members going through more than you realise. It’s easy for others to say that a condition doesn’t define you but it can take some of us a little longer to apply that concept in practice.

As for me, well…a change is coming – you may never know what cards you will ever be dealt with in life, but you can choose how to play the hand.

Thank you to my family and friends for their continued support.

September is Alopecia Awareness Month. For more information surrounding Alopecia or if you know anyone who is requiring some support in coming to terms with a diagnosis, please refer to the Alopecia UK website at http://www.alopecia.org.uk