To many people it has connotations of laziness and no-hopers who just need to “pull their socks up and get on with life” (yes my friend was told to do that by a doctor!).
But for anyone who has experienced CFS we know we are not lazy or bored or just don’t feel like working anymore. We know we are actually very sick. We need the world to know more about this illness and for it to be taken seriously.
CFS, also known by its hard-to-pronounce and more scientific-sounding name, Myalgic Encephalomyelitis (ME) or the latest catchy name they’ve come up with, Systemic Exertion Intolerance Disorder (SEID) (rolls right off the tongue, right?) is a condition I’ve been dealing with for almost three years, a condition that took my plans for life and scrunched them up in a little ball to be tossed aside.
I was a busy 26-year-old living in Melbourne, working full-time in publishing, studying my masters of communication part-time, playing lacrosse, having a social life, and busy glorifying how busy I was.
Author Susan Mackenzie. Image source: supplied.
Then I got sick. I was knocked off my path and thrown into the strange and frightening world of chronic fatigue syndrome. I’ve tried to explain what this illness feels like so often, and the best I’ve come up with is this: It’s the flu, plus the worst hangover of your life, plus shocking jet lag. But even that doesn’t begin to explain the complexity of a multi-faceted illness like CFS.
At its worst, CFS means you’re bed-bound, in a world of crushing fatigue and pain and experiencing a whole host of neurological symptoms from extreme noise and light sensitivity to brain fog to intense sweating to dizziness and nausea to chemical sensitivities.
At its best, CFS means brief glimpses of real life where you have energy and focus but never know how long they will last. It takes normal everyday activities like taking a shower or driving a car and turns them into ordeals that send you back to bed.
"I may look fine, I am actually very sick." Image source: supplied.
It turned my carefully planned life upside down and I had to move home to my parents’ farm to be cared for. I first had to endure three terrifying months while doctors resignedly told me they didn’t know what was wrong with me.
During this time the lymph nodes in my belly were so swollen that I could barely eat and I dropped 10kg in a month. I had horrendous headaches that had me convinced I had a brain tumour and on the rare good day I wondered if it was all psychosomatic and if I just pushed through the pain and fatigue and anxiety I’d be ok; this never worked, of course. So you can imagine how scared I was, and how overwhelmed my family were.
Then after all the blood tests and appointments my doctor eventually told me I had CFS. Finally, a diagnosis. Now could he help me get better? Not really. He went on to tell me that there wasn’t much a doctor could do to help, but that I could get better in time and shouldn’t push myself too hard; essentially, go fend for yourself.