People often wonder what we mean when they hear us talking about spoons or that we are unchargeable. These are words I never used before joining the world of the chronically ill and disabled. In this post I will try to explain the meaning behind these terms and which one I identify with most.
This might seem like a strange motto for the new year, but before you decide I’ve lost the plot, let me explain: I have Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS. It’s main characteristic is Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.
This means brushing my teeth, getting excited about a visitor coming or writing this post is exhausting and will have consequences in the form of a variety of symptoms.
December 3 is International Day of People with Disabilities. It’s a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.
The message I want to get across this year, is that not every disability is visible.
Since joining the world of the chronically ill, I have found that many spoonies (people with chronic illness) prefer to not share their condition with friends and family. They live a kind of double life. Putting on a show of normality, working hard to hide their disability or illness. Often becoming lonely, isolated and resentful toward those who have forced them to live that way.