Above: my island home
Hello! And welcome. I’m Siobhan, a 20-something living in country Victoria, and I’ll be blogging about life with severe CFS/ME, with some fun crafty creations thrown in along the way. Having CFS/ME turned my life upside down, and yet severe cases are underrepresented in the media and popular discourse. I want to change that.
Without further ado, here is an unedited version of a piece which was recently published on The Mighty, about life with severe ME/CFS. Enjoy, and feel free to drop in anytime!
Severe ME & me: or, what I need you to understand about severe chronic fatigue syndrome
“Oh, so you have CFS. I know plenty of people with CFS. They can work part time, and need a rest now and then, but they really try to live life to the fullest.” The lady in the shop smiles knowingly at me. My throat begins to choke up. This is not my experience with CFS/ME.
I am one of the hidden ones: the 25% of CFS/ME sufferers who are deemed “severely unwell”, that is, housebound, wheelchair bound or bedbound. We are your neighbours, daughters, brothers and friends. We do not follow the typical narrative of a CFS/ME sufferer – we are excluded from society by the very nature of our condition. And we demand not to be forgotten.
Like most people, I had a vague notion of what CFS/ME meant before becoming unwell – overwhelming fatigue, general malaise, intolerance to exercise. Nothing could have prepared me for the reality of living with severe CFS/ME. In a timeframe of mere weeks, I slid from being an HD uni student who volunteered at several organisations, to someone who struggled to attend one hour of uni a week. I would cry in frustration, staring at my timetable, knowing that the assignments and coursework that were once completed with ease had become insurmountable tasks. My social life became non existent. I spent most of my days in bed, staring out the window at the tree outside my bedroom. That tree became my comfort and friend. My precious violin, which I had played with since the age of 5, sat in the corner, gathering dust.
The worst was yet to come. My health progressively became worse, as my parents and I visited countless doctors for answers. The best I could hope for was a simple “I don’t know,” the worst, lies and accusations. I was “attention seeking,” hysterical. I was told there was no one who would help me. Meanwhile, I struggled to leave the house once a week. I wondered whether my struggles would have been taken more seriously if I was a man. Surely then I would not have been accused of being a drama queen.
How was I to react when a well meaning stranger assumed my illness was one of mere inconvenience? The idea of living without 24 hour care seemed like a pipedream, so the suggestion of working with this illness was nothing more than a cruel joke. Doctors could not, or would not help me, as they were stuck in the paradigm of CFS/ME as no more debilitating than the common cold. Specialists in the nearest capital city would only treat those who were well enough to travel to them – a self fulfilling prophecy if I ever saw one.
Finally, after some ill advised “treatment” and medication from health professionals, I became fully bedbound. The agony of being trapped in one’s own bed is impossible for an able-bodied person to conceive. My body slowly shut down, one faculty after another. Earplugs were in permanently, blocking sound which pained me; my blinds were shut to keep out the light which burned my eyes. Showering, or being showered, were impossible tasks: I could hardly sit up long enough to go to the toilet, so how on earth could I make it to the shower? My mother became my nurse, wiping my ass and brushing my hair. Doctors rejected my parents’ pleas for help.
The impact of ill-informed views about CFS/ME are not only hurtful, but can much worsen the cases of severe sufferers. If the medical professionals who treated me had recognised my case as severe from the very beginning, would they have prescribed such inappropriate treatment? Would I ever had become bedbound, traumatised in hospital, if doctors recognised the difference between severe and mild-moderate CFS/ME and treated me accordingly? A recent survey by the UK ME Association found that most respondents were significantly worsened by standard treatments such as graded exercise therapy. If the nature of CFS/ME was better understood, no patient would have to suffer from “treatment” that harmed, rather than helped.
Laura Hillenbrand, author of Seabiscuit and Unbroken, and prominent CFS/ME sufferer, once said, “Fatigue is what we experience, but it is what a match is to an atomic bomb.” When doctors assume I can work part time and live independently, part of me wishes it was true. Severe CFS/ME sufferers experience the full atomic bomb, the complete annihilation of every bodily function which tears our lives to shreds. The refusal of so many to accept our experience is akin to a denial of reality. Who wants to admit that this illness, which can turn a match to some people’s lives, can also cause such devastation to so many?
This piece was not written to diminish the real and unique challenges faced by those with mild-moderate CFS/ME. But severe CFS/ME sufferers will never receive proper treatment until their cases are more widely recognised. Next time you someone who has CFS/ME, don’t assume they are capable of doing things just because your other friend with CFS/ME is. Listen to their story with an open heart. For the more who understand and recognise severe CFS/ME, the easier the lives of those who suffer from it become.