She’s spoilt’, ‘she picks and chooses when she’s too tired’, ‘why doesn’t she go to bed ear-lier or take a nap?’. These are all comments I am embarrassed to say I’ve made concerning my little sister who is struggling with M.E. It is only recently that I am starting to fully comprehend what the illness entails. The more I understand, the more I cringe at the thoughts I used to have. Myalgic encephalomyelitis (M.E.) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities.
The hardest part of coping with M.E. is the chronic fatigue it causes. We all know what it’s like to be tired; you’ve just finished an all-nighter or been out in town on a bender, but this is not the same thing. People with chronic fatigue are not simply tired, but physically exhausted and mentally drained all the time. If this wasn’t bad enough, they often face the patronising comments from ignorant well wishers about how they just need an earlier bed time. Worse than this are the condescending comments by those who doubt the severity of the illness because ‘she went out last week’, ‘I saw pictures of her on a run so she can’t be that bad’. A way M.E. effects people is that the impact of what they’ve done typical-ly takes a day or two to kick in. This is known as postexertional malaise or ‘pay back’. So yes, someone studied hard or has been to a party, what you don’t see is them struggling to even get out of bed. This rings back to one of the undeniable issues with social media; you only see the good aspects of people’s lives, not the bad and nor the consequences. You have to make tough decisions about what to put your energy into. Is going for drinks really worth a day bed bound? If I try to exercise I may not be well enough for that family meal. Constant compromise leads to stress, anxiety and the never ending fear that you are missing out. Around 200 000 people in the UK and over one million in the USA have M.E. More than HIV or multiple sclerosis. Most are unable to work full time and up to a quarter of M.E. patients are housebound or bedbound.
Currently there is no proven cure. M.E. is not life threatening. But it will alter your life entirely, chipping away at all the things which used to matter to you most. Just because you see on Instagram someone who lives an exciting and busy life, does not mean it’s their reality. If someone with chronic fatigue chooses to go to a gig, they have chosen to sacrifice the next few hours, days or weeks to for this. Don’t make the ignorant assumptions I did. I have the upmost respect for anyone living with any chronic illness, it is a challenge I cannot comprehend and I am frequently baffled by the optimism, determination and ambition shown by friends who have to cope with this sort of illness on a day-to-day basis. My little sister is the strongest, bravest and brightest person I have ever had the privilege to meet and I admire her more than anyone in the world.