Growing Up Invisible: Living With A Hidden Disability
For many years I feel I have been living two lives, the life society has expected of me, and then the reality of who I am. This is the reality of the challenges I have faced growing up with an invisible disabilty. When I was 12 years old I faced the world changing in a way I had never foreseen and was diagnosed with a genetic tissue disorder. There is no cure for my condition. For two years now I have been unable to eat or digest solid foods, X-Rays show the extent to which my spine has deformed and every day my family and I face the fear that my blood pressure might drop so low that I will lose consciousness and need immediate medical attention. Life does not unfold in a way we might expect, but from these experiences there is always opportunity to grow. With this in mind, I have decided it is time to tackle my fears head on and make a film about living with an Invisible Illness. Not everything is how it first appears. Especially in the modern world. What nobody has seen in between the glamour, the films and the fun has been this illness tearing me and my family apart. So I feel it's damn time to do something about it! This new documentary is called 'The Dark Horse' and whilst designed to raise awareness of invisible disabilities I will be tackling my physical limitations by delving into sport. Whilst my legs often become too weak to walk. I have found freedom on the back of a horse and have rediscoved passion for life that I had long believed was over. In addition to my filmmaking exploits (I'm still writing The Wall of Lyon script!! Promise!!) I will be delving into the world of para showjumping, a sport that is currently fighting for international and Paralympic recognition. Over one million disabled people were employed in the U.K after London 2012 Olympics, and 1 in 10 people in this country live with a life changing illness nobody can see. With those kind of statistic I believe it's important that we make a change. So I invite you to look around and question what challenges the strangers you encountered today might be facing, even if on the surface their lives may appear 'perfect'. I hope with all my heart you feel inspired to join me on this journey, already there as so many people I want to thank for their amazing kindness and support! This is my poem for the invisible, hope you enjoy and have a wonderful day ❤️ DM Orthotics Shires Equestrian Rotolight Para Equestrian Jumping British Showjumping Fédération Equestre Internationale British Paralympic Association ParalympicsGB Paralympic GamesPosted by Ashleigh Harley on Sunday, April 21, 2019
With her blonde hair, youthful complexion and brown eyes, Ashleigh Harley looks every inch the model, social media influencer and budding writer and film-maker.
But, for Ashleigh, that's a problem she is addressing in a new documentary.
Ashleigh is one of millions of people who live with a hidden disability.
In her case, it's a rare condition called Ehlers-Danlos Syndrome (EDS), which can leave people in crippling pain, suffering from weakness in muscles and tendons. It can cause joints to pop out of their sockets.
"There are 13 different subtypes of EDS," explains Ashleigh. "And there are 255 million people in the world with all the different subtypes. The result is a very misunderstood condition."
Ashleigh was just 12 when she was diagnosed with EDS and that came only after months of travelling back and forth between London - where her family consulted specialist doctors - and her home in the Midlands.
"It was pretty terrifying to be honest," she explains, "because at first we didn't know what it was when the condition first came on. I would just go blind and be paralysed for a few days. We were just all really scared.
"It was a relief to know what it was at the same time. It's currently a case of managing it."
There is no cure for the condition so "managing it" means a lot of daily medication and putting up with the painful effects of EDS.
"I can't eat solid food. And today, I haven't even been able to drink water because I keep throwing up. It's difficult actually for the doctors to be able to prescribe medication I can tolerate because I have allergies to the intravenous medications."
A deformation in Ashleigh's spine has also been caused by the illness, which requires her on occasion to walk any distance using crutches.
What is Ehlers-Danlos syndrome?
- Ehlers-Danlos syndrome affects connective tissue which supports skin, joints and bones
- Symptoms include joint hypermobility, dislocations and stretchy skin
- People with the condition can bruise and fracture easily - and are often in chronic pain
Source: NHS - Ehlers-Danlos syndromes
But despite the problems EDS has caused her physically, often suffered behind closed doors, it has lead to Ashleigh feeling discriminated against, albeit unwittingly, by people when they comment "on how well I look".
"I say, 'well you didn't see me throwing up this morning'. People don't understand that you can look well, and be living with a chronic condition."
Ashleigh, who wrote and directed a short sci-fi film called The Wall of Lyon, which showed at film festivals around the world is now working on a new film, The Dark Horse, which aims to shed light on her disability.
She says it has taken her a long time to be able to find the confidence to speak out about her condition.
"I was bullied quite badly for being ill," she says of her childhood. "As a result of that, I felt quite terrified of telling anyone. But then I just realised that there's no point in being anything other than what you are.
"So it was time to just stand up and say that this is the truth."
Part of the new film focuses on Ashleigh's attempts to have showjumping recognised as a Paralympic sport.
Equestrian events became a part of the Paralympic Games for the first time in 1996 in Atlanta and is open to athletes with any type of physical or visual impairment.
But disciplines are limited to dressage events, a championship test of set movements and a freestyle test to music.
Team GB have enjoyed a huge amount of success in the field, winning more than 30 gold medals.
Ashleigh - a keen jumper from her early years - says the sport has helped her cope with the impact of her illness.
"I wanted to overcome my physical limitations, as I think a lot of people in my position do," she says. "Because I've loved horses most of my life, I just couldn't stop myself riding any more. So I turned to my parents one day and said, 'I really want to get on a horse again'.
"I realised that despite my limitations, I can still rise and find a way to get around a course of show jumps."
Announcing her intentions on FaceBook, she says she has since had messages from all over the world.
"[They] are desperate to compete in Para-showjumping, but just don't have the opportunity because their country isn't supporting the sport."
According to Ashleigh, in order to get the International Paralympic Committee to recognise the sport, it would require more than 30 countries organising regular competitions.
It's a Herculean task, but Ashleigh is convinced it can be done.
"At the moment, we've got Britain and we've got Germany, we've got France and Ireland. And there's been a lot of interest from America and Russia as well.
"I'm literally at the point now where I'm going to the IPC at the end of the month and we're starting to talk about it."
Her efforts have been applauded by British Showjumping, chief executive Iain Graham said: "Ashleigh is incredibly inspiring, not only in the way that refuses to let her disability stop her participating in the sport she loves but also in respect of her wanting to raise awareness of the the para jumping competition structure that we have put in place so that other like-minded people can participate in it.
"With Ashleigh's passion, vision and personal drive to make other nations sit up we may well be on the way to delivering this sooner than we had hoped."
While the destination is clearly important to Ashleigh, the ultimate recognition of Paralympic showjumping, the journey is of equal importance.
"The thing I would like to see is people starting to look around and not make assumptions on other people that their life must somehow be better.
"It'd be hard to measure but if I could make that change in any small way, I'll be happy."