When I was commissioned to write this article, I felt a sense of trepidation; how do I talk about this complex condition without boring readers with statistics or depressing them so much that they feel the need to reach for the nearest alcoholic beverage? I decided that there was only one way to go about it, to be completely open and honest about a condition I have had since the age of 12, one that affects around 250,000 people in Britain. Almost impossible to definitively diagnose, the neurological condition is called Myalgic Encephalopathy, which you’ll probably know as ME.
On the outside, I don’t look any different; this is not identifiable by a plaster cast on your leg or a patch over one eye. Its virus- like symptoms – including debilitating fatigue, sickness, depression and severe muscle pain – can be overlooked and dismissed as someone “being a bit run down”, which I guess is why doctors find it difficult to identify, and sufferers feel silly for seeking help.
I was 12 years old, starting my first term at one of England’s most prestigious grammar schools. I was finding my feet and adapting to new challenges, not least having to get my head around wearing hideously unflattering gym knickers. Then, around October, I caught a flu- like virus – nothing too serious – but it just never went away. For months I continued to suffer from severe fatigue, sickness, weight loss and depression, barely managing a morning at school or to walk for more than a couple of minutes without being in agony and having to sleep for the rest of the day. In January, after around 15 trips to my GP and countless tests for everything from leukemia to glandular fever transforming me into a human pincushion, my dad decided he had had enough and stormed into Lancaster General Infirmary with myself in tow. I stayed there for 11 weeks, sleeping up to 22 hours a day, unable to walk or eat and generally doing my best sloth impression – minus the hanging upside down part!
Friends and even some family members found it impossible to understand, making me feel alone and frightened; this is a “normal” reaction, with some people on online forums saying that others have accused them of being lazy and needing to get a grip. ME is generally a lifelong condition, one which can be managed, but which is always present.
Support for sufferers can only be gained through understanding and more importantly research, which recieves little funding. As diagnosis is a long and drawn out process of elimination, patients can be suffering for lengthy amounts of time, with no idea of what is wrong with them, as I did. It’s a scary memory.
However, amidst all this doom and gloom, I have a positive message, which I will try and get across without sounding like one of those motivational speakers that you simply want to punch in the face. I still go out, go clubbing, go to uni and generally do all the ‘normal’ things in life. I have to be careful not to overdo things and tire myself out too much, otherwise I start to look like Bambi on ice, and sickness remains an ongoing battle, but in the grand scheme of things, I enjoy life to the fullest. I have an amazing support network of family, boyfriend and friends who don’t make me feel alien because of something I have no control over.
I would urge anyone who thinks that this could be the cause of their suffering to seek help, to not give up hope and to push for a diagnosis. Treatment can range from antidepressants to dietary changes to physio. With the right support and care, you can feel better; you can go on and do everyday things without added complications. Most importantly, I feel, is to speak out and through this, and to the end the unnecessary and often unhelpul stigma that surrounds these types of illnesses.
For more information visit www.meassociation.org.uk