When I became unwell in 2006, I literally thought that like any other virus or bug I had previously got, it would just get better quickly and I would be back to my old tricks soon enough. I never thought it was going to be a seriously life changing condition that would be with me for life.
When I was formally diagnosed with M.E., I didn’t know anything about it. I didn’t know that the majority of people live with this condition for life. I was naive. I was young. I was carefree. My life changed dramatically overnight and even now, I don’t actually remember what it feels like to be fully well or to be how I used to be. That is a distant memory from far away, in an alien world to me.
I had to completely readjust my expectations for my life. Before, I wanted to be a globetrotter, I was a high achiever. Life in its very essence was there for living. Then M.E. struck and I couldn’t let go of having those expectations for the future. It was what kept me going. Over many years, I realised that I needed to change my idea so I didn’t constantly feel rubbish that I was not achieving what I wanted in life.
At the very beginning of my M.E., I think keeping that optimism that things would go back to how they were, helped me enormously. I know this sounds strange. When I was diagnosed, I had no idea what it was. I didn’t know anyone with M.E. and my parents decided to not tell me the eventuality of having M.E. for life. There was very little social media in 2006 so I didn’t find lots of other people with M.E or read personal stories. It was all new.
Now, I’m obviously more aware of the reality of M.E. and I think I have changed my perspective quite considerably. I now enjoy the small things that I achieve. If you had told me five years ago that in 2019, I would be expecting my first child, I would have thought you were mad! That is the thing with the future though, it is uncertain and you never know what’s around the corner.
One of my main reasons for publishing A Girl Behind Dark Glasses was to show the treatment of severe M.E. and to change how we view it. In 2006, there was barely any information or treatment of M.E. That was thirteen years ago. If I went back to that time, I would have hoped that we would by now have proper biomedical research into the disease. A cure maybe? The reality is, we are no further forward.
My family had to fight so hard against the psychiatrists to stop me being taken to a mental institute with a physical illness.
I hoped that it wouldn’t still be the case in 2019, but it is.
#TheRealME #GoBlue4ME