Alopecia Awareness Month

September is Alopecia Awareness month. Sue has been a regular attendee at our yoga classes over the years. She has written a moving personal reflection for us on her journey through alopecia. We hope that in sharing this it will help to raise awareness of alopecia and prove helpful. I’ll hand you over to Sue!

My personal journey with alopecia

It’s autumn, it’s 2020 and it’s been a year which, so far, has been pretty pants. All of us having to adapt to the changes brought about by a global pandemic.

I’ve never written anything like this before and I suppose not only find it challenging but also a little uncomfortable. Observing ourselves and sharing thoughts doesn’t always come easily. Whenever in the past I have challenged myself to experience new things I might normally avoid it has often proved ultimately to be a rewarding experience. …..so here goes!

Strange to think that September is already here. This month for me, brings another birthday, (number fifty eight if we’re counting!!). Also a time of reflection and contemplation.

I wouldn’t admit to welcoming the shift this month brings. With predictable regularity it reminds me that I do not possess the ability to postpone the arrival of darker mornings. Nor try as I might, find a way of hanging onto summer, my favourite season.

My name is Sue. I’m mum to two grown boys, a nurse, I’ve developed a love of yoga……..and I have no hair.

Alopecia Awareness Month

September is also Alopecia awareness month. This one marks the eleventh since my body turned on itself and altered my ability to grow hair. Dramatically altering my appearance.

Hair loss for anyone can be a tricky thing to deal with. I was first alerted to mine when pregnant with my first son. A small, perfectly round, penny size bald patch appeared on the back of my head. Reassured by nursing colleagues it was pregnancy related and would regrow I ignored it and it did, but as one patch grew back another appeared.

By the time I delivered my second son, fourteen months after his brother, large hairless patches occupied much of the back of my head.

Alopecia diagnosis

A swift referral to dermatology followed (something I still struggle with as my alopecia is an autoimmune and not a dermatological condition) and I was diagnosed with alopecia areata. This is an autoimmune condition which sees a specific type of T cell in the body cluster around and attack the hair follicles, preventing them from producing more hair.

At the initial appointment I was handed a diagnosis and also, with little compassion, informed by the first specialist I encountered, that there was no cure for what I had, that it was likely I would lose all my hair, and that should this be the case I’d be entitled to vouchers for NHS wigs which I could obtain from the hospitals appliance department. Great!!!

Reaction to the Alopecia diagnosis

What followed is, I believe,  not uncommon. A period of great sadness and almost mourning. I was mercifully followed up by a wonderfully kind, now retired dermatologist who supported my angry and desperate attempts to prove both medicine and my body wrong.

This is a journey, as a nurse, I see many travel and who I now  try to support when they face  a difficult to accept diagnosis.

Mine was an anxiety filled minefield punctuated by a series of unpleasant therapies and medications which would see my immune system horribly suppressed. By the time I’d exhausted the list and also myself, I was finally at a point where, with great sadness and reluctance, I accepted that the medical research was correct and that there is no cure for alopecia.

Reaching a place of acceptance

Many years followed during which I disguised my hair loss but with it’s rapid acceleration in 2009 things quickly reached the point of no return. It was that September that my youngest son shaved the final wisps of hair away.

I can say with complete honesty that this was a truly liberating experience. Having been at the mercy of unpredictable, widespread and very patchy hair loss, I was finally back in control of my appearance and not sitting, mourning the loss of more precious locks on a daily basis.

Not quite done with me alopecia did manage to kick my backside one final time that year as it robbed me of my eyebrows and  lashes. I was incredibly saddened by this final insult and felt alopecia had stolen my face. All the landmarks which give us shape and form were gone. I felt as though my features had been rubbed out.

Incredible experiences and long lasting friendships

Now all this might sound a bit doom and gloom but this is not the case. Alopecia has been an intrinsic part of my journey. It’s influenced my thoughts and decision making and rewarded me with incredible experiences and long lasting friendships.

I knew from the get go that wigs and I were never going to be friends. I’m more of a sunscreen in the summer, bobble hat in the winter type of girl. There are beautiful wigs and head coverings out there for those who feel happier covering their hair loss. Psychologically, these are very necessary in allowing some people to function happily and get on with their lives. I tried very briefly but knew I just couldn’t do wigs. It was so much comfier wearing waterproof eyeliner, big earrings and a smile.

Glastonbury festival 2010 was one of the hottest on record. Would I have traded my tanned little bald head for hair as I stood close to the pyramid stage….absolutely not!! There are some benefits having Alopecia!!

Alopecia UK

Alopecia UK is an organisation which has been an incredible support to me throughout. I remain eternally grateful to them as a charity for their advice, hair loss survival tips and friendship.

In 2012 Alopecia UK were approached by London based photographer Daniel Regan who hoped through his work, to help support people affected by alopecia.

I decided to respond to his request asking people with alopecia to volunteer and be photographed. One saturday morning I drove to the capitol, devoid of any makeup and let a stranger capture on film what he saw.

Uncovered Exhibition

https://www.danielregan.photography/

To this day I struggle to explain how or why the image he created was to have such a positive and powerful impact on my wellbeing. I think I can speak for others who were also photographed. As part of an exhibition entitled “Uncovered” my picture hung with theirs in Frameless Gallery, London where they were viewed by the public.

It was odd but strangely reassuring to watch members of the public looking closely at my face and reacting positively to much of what I’d perceived as being very flawed. Many of us who’s faces hung out together in the gallery then, still keep in touch now.

As for Daniel Regan, he remains a true friend and someone I love dearly. I’m now referred to affectionately as his “liverpool mamma”, a title I feel very privileged to own.

Sue with photographer Daniel Regan

Yoga and sitting for a photographic portrait

I try hard these days not to do the should’ve, could’ve, would’ve thing but I do reflect on life’s experiences. In writing this, I’ve considered what might have been the elements involved in sitting for a photograph taken by a then stranger, which had, and continues to have, such a positive influence on my life. I didn’t practice yoga then but do now. I’m able to reflect and question if some components of yoga practice where unknowingly at play.

Could it have been the non possessiveness associated with surrendering my time and my face, allowing and encouraging someone else to use it to help them with their journey? A comparison in yoga practice might be “Aparigraha” which is a letting go of what is not needed or not serving you.

As the shutter clicked and Daniel worked I remember consciously slowing my breath. Smoothing my brow, dropping my shoulders. Closing my eyes and focusing on projecting outwardly the growing sense of peace and contentment I was inwardly feeling. Comparing this with my yoga practice today, I realise what I was doing. I was directing my awareness (mindful meditation) and focusing on my breath (pranayama).

Photo-asana

Through yoga teachings we become aware that energy within us travels via channels referred to as nadis. As with all channels, any blockage will interrupt the smooth flow of whatever is transported within it. Was it that the act of sitting, really breathing and setting a mindful focus or intention which helped release something I’d been unconsciously storing?

The final component involved in sitting for a photographer involves altering the body’s shape or posture and holding this for a period long enough to allow a visual artist to work. In Sanskrit the term for posture or pose would be asana.

Reflecting on that pivotal moment and all the components contained therein which produced such an amazing, long lasting, totally natural “high” with feelings of letting go, acceptance and calm, maybe the stage was set that day for me to seek other ways to introduce more of that “feel good” stuff into my every day.

Reflecting from 2020

So here I stand now. I have, in reaching 2020 had to occasionally let go of people who are not good for me but on the flip side, have also made many super and lasting friendships. I’ve continued to nurse because I love it but have modified and adapted my practice to enable me to nurse in ways which bring more happiness and meaning to my life.

There have been such memorable, irreplaceable, happy family times. A couple of parachute jumps, a love of stand up paddle boarding.  And some cracking travel opportunities when I’ve been wowed by some of the natural spectacles our beautiful planet offers.

As we all know though, life’s not always pretty or kind. Life does seem to have the knack of throwing the odd spanner in the works when we least expect it.

Finding Yoga

A couple of years ago that’s sort of where my life was. Newly divorced, new to Heswall, a little tubby (still am!!)  and not remotely fit or flexible I decided to join a couple of yoga classes. My thinking was that yoga would serve as somewhere, unlike some swanky gym, where a slightly portly, bald, female singleton could go to hide. And maybe in the process shed a few pounds.

I did a bit of online research which led me to two blokes (three if we count Archie), who, in the Wirral yoga universe, are known as The Yogasmiths. These two, Steve and Paul, together with many other gifted yogis, have patiently and with kindness, encouraged and supported the development of my yoga practice.

Sharing is caring

Paul approached me a couple of weeks ago and asked if I’d be prepared to write a blog. A little about myself and my journey. They’d recognised that from time to time they meet some people who might be struggling with some image altering problems. By sharing some of my experience, particularly during alopecia awareness month, hopefully some of my words may offer something to someone who might not be having such a great time.

We all have differences. Some are more noticeable than others. Many, including several forms of hair loss are not as permanent, obvious or long lasting as mine. Coping with a problem is often what prompts someone to access support networks and meet with others. In my case it was through that initial contact with Alopecia UK that I followed a path which led me to Daniel Regan and the magical, natural high my body woke up to when sitting in a photographic studio in London…the very same feelings which yoga practice now brings.

Now I’m not about to claim that alopecia dictates my day to day (I actually often forget I have no hair), or that a photograph taken in 2012 possesses strange, magical properties. I can’t preach that the different types of yoga I love to practice now hold the answers to anything but what I can say, with absolute certainty is that I believe the three to be inextricably linked.

Follow your heart

At points during the COVID-19 lockdown I jumped at the opportunity to be able to access on line yoga classes taught by highly respected yogis. A couple of these were with David Sye. David is a yoga teacher, musician, humanitarian and someone who believes yoga should be a “spontaneous, unapologetic and sexy celebration of life”. Interviewed in 2015 he said that if we look at the greats, all these artists, scientists, creatives have been moved by their hearts and not their brain. It’s never about the brain. He speaks about following your feelings and trusting that if you do, life will support you. David says that in making himself happy this makes the people around him happy too. This is true.

I suppose what I’m trying (badly) to articulate is, that when I follow my heart, my gut instinct and, quoting David Sye again “pay big attention to the small things and small attention to the big things” something quite wonderful will sometimes happen.

The yoga effect

When I practice yoga nothing can touch me. Not work, not social media and nobody can demand my attention or distract me. In those moments I’m back in 2012 again. I’m in a place where I dedicate my practice/set my intention. Let go of what isn’t needed, focus on the breath and accept being me. Knowing that all I need at that time is within me.

yoga and alopecia

Gurmukh Kaur Khalsa, a teacher of kundalini yoga (something I’ve yet to experience) wisely said “yoga is not about self importance, it’s about self acceptance”.

If anyone in the Yogasmiths fold is struggling to cope with hair loss and feels I might be able to help in finding organisations or individuals who could offer advice and support, let me know. I’d be happy to try.

Photo credit – Daniel Regan (black and white photograph)  www.danielregan.photography/alopecia/

Resources

Alopecia UK – www.alopecia.org.uk

Changing Faces – www.changingfaces.org.uk

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