So people look at me and see a walking, talking human being, with nothing wrong with her. Let me tell you about myself, in 2008 whilst studying a BTEC Musical Theatre I was diagnosed with ME (Myalgic Encephalomyelitis). Then in 20011 as I started my top-up degree in Performing Arts – Acting I was diagnosed with Fibromyalgia, both affecting my body in different ways, and the consultants believe historically I have had both conditions since around the age of 9 years old (which explains a lot about my growing up at that time, “growing Pains”, being overly tired because I was fat, etc). It is quite common in the acting / performing world (more common than even I knew). Lady Gaga recently had to pull out her tour as her Fibromyalgia was that bad. Morgan Freeman suffers with Fibromyalgia as well, these are just two stars that have been open and frank about the condition.
So what is it like suffering with these conditions and working as an actor. Well I can certainly tell you how it has been for me… But these conditions are variable between each person who is diagnosed and within that person again it is varied. Confusing, yes it is, basically for me I have it on the mid range, so my good days I can walk around and look like a normal functioning human being. But my bad days can see me bad enough to be bed bound and having to be helped to the toilet. These conditions can be soul destroying and can leave you feeling like you have no dignity.
So why do I act? I act as it is something I have done since before I was diagnosed and unlike some people who I know that have been diagnosed that have given up and taken to their beds, I refuse to give up and let these sometimes debilitating conditions rule my life. However that said, some people in the past have said to me why don’t I go out and get a “real” job, like acting isn’t a “real” job, or why don’t I get a steady 9-5 job. They would be great if it weren’t for the fact that I need to be able to get up and walk around when I need to, sit down when I need to, take breaks when I need to, have power naps when I need them. Oh and how many employers would allow me to randomly take two weeks off whenever I needed to at short notice? Not many, if any that I can think of, and the problem with these conditions is when they flare up, you don’t always get a warning, it hits you like a freight train and it can put me personally, in bed for up to two weeks.
With acting, I have some sense of normality, it is something that I have done for a very long time. I have regular breaks (as it all depends on when you are needed), I can usually grab the power naps I need between me being needed and all production crew are made aware of my needs, so with their duty of care in place, we work really well together and I get to work at something I enjoy doing.
My conditions also mean that when it affects my legs badly enough I can be wheelchair bound, if they are a little bit painful I can use either two crutches or my stick, or if they are having a good day, as we say, I can get by holding and walking short distances with my partner. Life is certainly interesting with Fibromyalgia and ME, I wouldn’t wish these conditions on any one as they are horrendous, even at their minimal levels. But one thing I will say here and now… These conditions DO NOT define me as a person, THEY WILL NEVER BEAT ME and I WILL GO ON doing the job I love.
If you want to know more, I am quite happy to talk openly about my conditions, I don’t think any condition should be a taboo, or not talked about, I am an open and approachable person. Please feel free to contact me via any of the media I have.