Living with chronic fatigue: "We're not lazy or bored. We're actually very sick."

Today is CFS Awareness Day. “What’s CFS,” you say? Well it stands for chronic fatigue syndrome, a rather poorly named invisible illness that has so much more to it than debilitating fatigue.

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.

I then entered the truly scary and overwhelming world of CFS; I felt alone and abandoned by the medical fraternity, even getting them to sign my required medical certificates for Centrelink was an ordeal, so I looked to anyone else who could help me.

After 18 months on my own, I found the CFS Health Centre in Melbourne, run by former sufferers of the illness who have fully recovered. They teach CFS sufferers how to slowly step back into a meaningful and healthy life, and most importantly give them hope for the future.

They help me to believe that I will recover from CFS and have a full life again. I see a future where I can work again and support myself and have a social life and maybe one day have children; I will simply live, and trust that my body can keep up.

Susan and her dog. Image source: supplied.

And the good news is, that thanks to their help I am actually getting better. I have improved enormously from when I initially got sick and can now drive again, cook for myself, and on a good day, have the mental acuity to write things like this. My headaches are less frequent and less overwhelming, I rarely wake up having sweated through my pyjamas anymore and I have a normal appetite and sleeping routine.

But if I overstep the mark and do more than my body is capable of, I crash right back down again and the overwhelming symptoms come back to haunt me.

What has helped me the most are the friends, family, and few health professionals who do their best to understand this illness and want to help me. I actually started writing my blog, A Snoozie Life to inform my friends and family about what was going on.

I wanted to help them understand that even though I may look fine, I am actually very sick. Just because I managed well yesterday doesn’t mean I will today. Please do not be mad at me for cancelling plans yet again.

Watch Yolanda talk about the struggle of battling an illness when you don't look unwell. Post continues below. 

Thanks to social media I now know people all around the world with CFS, and we all struggle in different ways. Where I can read for about 30 minutes, another CFS sufferer would be bed-bound for a week if she tried that. Some people can walk for kilometers and others can barely make it to the bathroom.

Whatever range of symptoms CFS sufferers have, we all have these things in common: we are trapped in our own bodies, desperately wanting to get out, and we are so so grateful for the select friends and family who are still there supporting us and keeping in touch.

Author Susan Mackenzie is a writer from Victoria, Australia. Visit her website A Snoozie Life.