Today, May 12th, is ME awareness day. ME stands for Myalgic Encephalomyelitis, which you may also have heard of as Chronic Fatigue Syndrome. A lot of people, myself included, like to refer to it as ME rather than CFS as CFS doesn’t quite encapture the chronic pain, the real exhaustion and the debilitating nature of the the illness; too frequently you hear ‘oh, I get tired too’ or people calling you lazy, and the only way to stop their ignorance in its tracks is by telling them the brutal truth, the symptoms, how you spent- or didn’t spend- the morning, and all the things your illness has stopped you from doing.
As someone with ME, I can tell you- chronic fatigue is so much different to ‘tiredness’.
I’m going to keep this post short and sweet as I quite frankly do not have the energy or a clear enough mind to keep writing, but I felt the need to post something about this hellish illness I live with on it’s awareness day.
I am fed up of my chronic illnesses and disabilities being ignored and shrugged off. I am an 18 year old irl with early onset disabilities , and I find it bloody hard to accept that I’m ill (as other people seem to, too).
That’s another thing- you won’t see my worst days. You might see me hidden behind make-up and smiling, but I’m smiling through a heavy dosage of painkillers and the knowledge that you didn’t see my collapse this morning, you didn’t see me paralysed and unable to get up after a 24hr sleep. Most days I struggle to do basic necessities like getting up and getting food.
My CFS had massively impacted my life. That’s even proven by the fact I decided to write this out on paper before typing it, and despite not touching a pen today, I’m struggling to go on from weakness and pain.
My CFS has contributed to my lack of attendance during my last year of sixth form, and has made me retake my final school year. I have spent lots of this year bed bound due to CFS and things that have been caused by CFS. Nor has it helped my mental health. A hell load has been added to it. Be it the confusion and denial, nature of chronic pain, general impact it has had, or the brain fog I frequently live with, I needed recovery and have been served the opposite. I also feel very isolated.
I’m not looking for sympathy, just awareness. Chronic illnesses are real and valid, and my ME’s invisibility makes it no less debilitating. Please respect me and be aware of that.
Lauren Curr 12/05/17
A final note- TFL have started doing ‘please offer me a seat cards’! I have applied to them due to having EDS, ME and FMS and therefore frequently being unable to walk or stand, or generally in pain, too. It’s so validating and important so if you think you need one, just type the quoted into your browser and apply! Hope this helps ❤️