There are in fact plenty of personalities who have a variety of conditions who often speak of their disabilities.
Stephen fry, Stephen Hawkins, Ruby Wax, Steve Redgrave, Tanni Grey Thompson and so many more.
Fortunately, or unfortunately, depending on how you look at it, they have the backing of money to help them deal with these debilitating diseases and life long illnesses. Many of us don't.
We have to struggle on with cuts to all our services, benefits and social care.
Yes i know of some celebs who have done interviews about their conditions too. I am not a celebrity but I have been writing for 3 years having had CRPS for 5 years amongst other things following an RTA. The writing comes really easy to me on the days when i am capable of course but its getting a literacy agent to share my vision of educating health professionals and giving other sufferers hope in knowing that they are not alone that is the hard part. In fact it really annoys me that all these books on people who are abused as children (which of course is terrible) get published all the time. I am not looking for sympathy nor am i looking to cash in on my disability i simply want to share my experience whether it be with a relative of someone suffering with a pain condition who reads it and benefits from knowing what their loved one is going through as lets be honest quite often we try to hide our pain from those closest. Why do agents tell me that this subject isnt needed or in demand when there are millions of people out there suffering from chronic pain conditions? Elle x
Being a Michael Crawford fan for a long time now and I love to catch up him in the news and the media. He has a great way of talking about his life, very honest and down to earth. I don't know how much they discussed M.E on the tv programme I'm afraid I missed it but here's a link to an interview article he did with the daily mail which I think is covering pretty much the same stuff. I love that he's managed to pace himself it's a life lesson that I'm struggling with very much. dailymail.co.uk/femail/arti...
I have joint hypermobility syndrome and over on the HMSA forum there's a thread about how advantageous it would be to find a celebrity with JHS/EDS type III. Funny enough a lot of us are spotting 'bendy' celebs however just being overly flexible doesn't mean you will necessarily have or get the syndrome. Certainly we can't find any celebs that have the chronic pain issues that the syndrome brings. It still blows my mind that there are so many of us with chronic pain conditions with so many different causes. I don't think I am alone when I say that I really don't feel the nhs is tackling chronic pain very well. The statistics of pain sufferers compared to resources for pain management e.g specialists, CBT, pain centres etc. must be pretty shocking or at least that is the impression I get. Anyway I digress.....
Elle have you thought about publishing your book through a charity? Being a writer but never seeking publishing I might not actually know what I'm on about here. But I might try to ask a charity to publish your book for you as part of their literature you could always give them a donation from every book say. Or you could try a speciality publishers that are directly concerned with health issues for example jkp.com/ I'm not gonna prattle on about it as I said I haven't actively seeked out any publishers so I don't want to cause any offence if I'm 'preaching to the choir' so to speak. But I wish you well with your quest for publishing and I'm glad you have something like writing to feel positive about.
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