As most of you are aware today is May 12. What most of you won’t know is that it is also International Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) Awareness day.
CFS/ME is a condition I’ve had for nearly eight years. It plagued much of my teenage years and continues to affect me today, though luckily it has improved and I’ve learned how to manage it and live a reasonably normal life, others are not so fortunate.
CFS/ME is a complex neuroimmune condition with a host of symptoms that can affect the brain, gastro-intestinal system, immune system, endocrine and cardiac systems. Approximately 35,000 Victorians have the illness and it can affect any age group. It has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases since 1969.
CFS/ME can range from relatively mild to so severe that patients are house or bed bound and even when mild can affect every aspect of someone’s life. Whilst fatigue is a major symptom, there are so many others patients experience, that are often not recognised, such as, disrupted sleep, problems with concentration or memory, muscle and joint pain, headaches, palpitations, dizziness, nausea, flu-like symptoms, sensitivities to food, light, sound etc. The severity that someone has it to can also change over time.
But despite this, it remains a hugely misunderstood and often trivialised illness. If I had a dollar for every time I heard someone comment one of these misconceptions, I would never have to work again. As an invisible illness there is no obvious problem, no broken bone or bandage and so like with so many other invisible illnesses many people just don’t believe the person is actually sick. I’ve heard everything from you’re just making it up because you don’t want to do something to I’m so tired too but I find exercise really helps or eat breakfast and you’ll be fine. Trust me, if that’s how easy a cure was nobody would ever be sick.
As you can see misconceptions are pretty damn annoying. Especially when your just glad you managed to be up, dressed and at uni by a time that is still counted as morning. Every task requires more energy than someone without a chronic illness realises and so each accomplishment is actually a big deal – just imagine what we could do without the illness. For a great analogy on energy levels read this: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
In my case I have got so used to managing it and hiding it (usually so I don’t have to put up with stupid misconceptions), that I can cover up having CFS/ME pretty well if I want to (although others don’t have this luxury). Though, I’ve realised that whilst it’s the easy option, education and speaking openly is going to have a far greater impact, especially if everyone does it. I might not have wanted this to be something that defines me, but whether I like it or not, it is. It is a large part of my outlook and attitude to everything that I do, I might as well embrace it. So, I’ve decided that this is what I will try to – put people’s misconceptions and ignorance in their place with a healthy dose of truth.
So today on May 12 and for the rest of the awareness week and month, take a minute to inform yourself or someone else on the facts, so the misconceptions can finally be put to rest.
For further information see:
Emerge Australia – http://emerge.org.au/
Better Health Channel – https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs