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There has been a great deal of talk in the press recently about the TV industry and the toll it takes on your mental health, both on and off-screen, and how the industry would shut down as we know it if all the freelancers walked out. There is an element of my journey that I’d like to think is a success story as I’ve been in the TV industry for almost 20 years, and although I have had to take career breaks these have been due to my cEDS (various surgeries or injuries), overall I’ve been lucky to always be employed.
But the hardest part has been pretending that you are ‘normal’ because, in an industry where there is a queue of people who are more able-bodied and willing to do the same job for less money, the competition is steep.
Recently I had the pleasure of meeting a young TV hopeful with Ehlers-Danlos syndrome at a workshop I ran and it got me thinking that by staying silent I am not supporting those that may need some help and advice.
The upside/downside about an invisible illness is occasionally you can disguise it, and for years I think my colleagues thought I was the clumsiest person on the planet. I was always in a cast of some description, but I tried to take jobs that allow for me to be able to carry on; as a celebrity producer you were picked up in cars, stayed in the best hotels, flew business class, basically traveled with the celebrities, but then you start to hear the question:
‘What have you done now?’
As it had become that frequent – the truth was always nothing. I’d woken up and my shoulder was out. I’d stepped off a curb and my ankle had popped out. I’d dared to use a pencil without the special support grip and dislocated all my fingers.
Then the accidents occur in front of your friends and colleagues – knees seem to be my worst at work. Whenever I cross them under a desk, due to the operations I’ve had to put them back together, I have no sensation and always knock my kneecaps out (then I must check for my own peace of mind that I haven’t also cut them).
Then there is the worst of all evils – commuting!
These days I’ve had to stop pretending. In my most recent job 3 weeks in, an accident on a surgery scar opened up on my foot and 6 weeks off turned into 3 months due to good old EDS and the many complications. They have been great but the guilt of not being able to be ‘normal’ took its toll. I’ve taken part-time jobs (when available but unfortunately they are like gold dust) in more recent years to try and accommodate, but even those have been tough and although I work from home as much as humanly possible, most jobs do require some office facetime.
However, I want this to be a positive article to show other suffers of EDS that you can have a career and you can find jobs to work for you. After-all there is nothing wrong with our brains (on good days!), the trick is learning not to be embarrassed and something I’m still struggling with is how to embrace what you can do but equally don’t be afraid to say what you cannot do.
Companies may say they are disability friendly but EDS is a hard disability to accommodate because, yes we’ll have recurring dislocations but with PoTs, IBS and the other numerous issues faced by sufferers. It’s also a disability that can be completely unpredictable and throw up a whole new issue – my GP said it best the last time my SI joint dislocated ‘what do you think we should do?’
Learn to trust your own instincts because more than often doctors may not have the answers but our community might just have some advice.
Last year I managed to embrace my EDS for my own wedding and had a seated ceremony and it was perfect – who cares if you can’t walk down the aisle and need a dress that covers the immense amount of physio tape holding you together 😉
Do speak up and do be proud that against all the obstacles you can still try and live your life, whatever your ‘normal’ might be. As is being tweeted/re-posted all over the internet: in a world where you can be anything BE KIND because no matter how ‘normal’ someone appears you never know what is going on behind the camera/behind the scenes.Tags: awareness, career, cEDS, dislocations, Ehlers-Danlos syndrome
Categorized in: Stories