The trouble with having an illness with so many misconceptions attached and so little understood is that it becomes almost impossible to mention. How do you explain your condition when you can’t say why it occurs or what it is? How can you be sure that the person listening will empathise and won’t already have the stigmatised narrative in their head? You can try to explain the science you know, the snippets of promising research that seem to indicate that you and your fellow patients were right all along – that you are really ill – but that all depends on your memory and mind working with you on that day and, even then, it’s likely whoever is listening wasn’t expecting (or looking for) the lecture it will end up being. I don’t know if I have ever been able to pull together a coherent explanation that wouldn’t sound more ridiculous than real. At the moment research has only pulled together a few loose threads for us to work with, we’re yet to find enough to weave a tapestry. My condition – M.E – remains a mystery.
One of the greatest stumbling blocks M.E patients face is the perception that it’s all in our heads – many doctors and scientists find it more comfortable to accept that idea over the possibility that there’s an illness they haven’t mastered or understood yet. Many in the medical profession, despite clear evidence now to the contrary and its definition as a neurological condition by the World Health Organisation, believe it is psychological, not physical, and so this discourse has dominated the wider consciousness as well. Never mind the countless stories of enormous suffering relayed by patients – their pride comes before our dignity.
At my worst, I had to drop out of school, left virtually housebound, in what would come to be one of the worst years of my life. I had blinding headaches that would last for weeks at a time and that no painkillers could touch. I experienced constant nausea for a year and a half, which made it almost impossible to eat. I battled with insomnia, as though hours spent alone in daylight weren’t already bad enough. I had pain in my legs so intense that often it would wake me if I did fall asleep and that left me so I could barely walk. I would have episodes where my eyesight would black out and I would need to lie on the floor wherever I was, as I would lose control of my limbs. My memory dissolved, and my concentration with it, and often I would struggle to talk or process what people were saying. On my very worst days I would become sensitive to sound, light and touch, so easily overwhelmed that the slightest thing would reduce me to tears and panic. I like to think I have a good imagination, but I’m not sure it ever could have conjured this.
When I received my diagnosis at the age of fifteen, my doctor put it on my records as ‘post viral fatigue syndrome’ and told me to avoid ever having the term M.E put in my notes, even though it was the same condition, because there was ‘too much stigma attached’. At least with post viral fatigue there was a suggested cause and therefore the idea that recovery was possible, she said. From the off I was told that my condition was something to hide.
After that I was told there was nothing to be done – only some vague attempts at symptom management but none of the medications worked. We were left to try to find answers on our own. I’m one of the lucky ones – I managed to claw my way back to good health for several years, although I’ve returned to rocky terrain more recently, with a flare in my condition. Now, thirteen years after diagnosis I have finally been referred beyond my GP, seeing a neurologist this spring and now with a date for an appointment with a ‘specialist’. The trouble is I don’t find much hope in it; the clinic I’m going to follows protocol which has been criticised by both professionals and patients as either ineffective or damaging and yet this is the best the NHS will be able to offer me or any of the 250,000 people in the UK living with M.E. It just isn’t good enough. Around the world the situation isn’t much better – millions of us are missing from our lives, unable to live fully or at all, with little to no support or understanding from those who are supposed to help us.
This week marks M.E Awareness Week and across the globe gentle protests will be taking place on 12th May. If my story has moved you at all to do so, please follow and share content on this day using the hashtag #MillionsMissing. You can find out more about the condition here and I would also urge you to watch the incredible documentary Unrest, which is available to stream on Netflix. Not only does it offer insight into some of the most severe cases of M.E, it also explains the history and science of the illness and why it has become so controversial far more eloquently than I could ever attempt to do. Finally, if you would like to make a difference closer to home, please consider buying one of my handmade zines about life with M.E – a portion of the proceeds from each sale will go to the charity Action for M.E, whose services have helped me to cope throughout my journey and which advocates for patients across the UK.