To anyone who may be new to ME/CFS, Long Covid or chronic illness…
I’m sorry if I wasn’t clear how bad it had to get before I admitted I had to try to put my health first and how hard it was/is to actually change my behaviour.
It is true that I shouldn’t need a label of “art” to elevate an activity to something meaningful or of value. But the mental gymnastics required to reject society’s expectations of acceptable use of your time is too exhausting. Educating others on why it’s not possible to be living a life out and about in the world is exhausting. Constantly monitoring and pushing back on your internal critique is exhausting.
Inspirational, quotes, mantras, motivational mottos and affirmations have their place in providing us with a way to refocus to the present or the positive, give hope, perspective courage or peace. If utilised at the right time they can be transformative. But on the bad days, words of wisdom need a little more lived experience of chronic conditions, a little more ME/CFS context to the grand aspirational proclamations.
It all relates back to the complexity of acceptance for those with ME/CFS. People treat it like a concept or goal to be achieved yet it’s an emotion that therefore cannot be a permanent state. We all contain multitudes.
There is a constant knot in the pit of my stomach. Hidden in the dark murky place where emotions mix and churn as they evade logic and reason. Holding onto one end of the knot is the person I am now, tugging at the other end is the person I want to be. Accepting I have to let go of the person I want to be is in theory the pathway towards the chronic illness jackpot of psychological flexibility.
A friend calls you. After you say, “hello.” The friend replies, “you don’t have to tell me. I can hear it in your voice.” What would you hope friends and family could intuitively understand about what you’re going through?
I actually thought I was used to being missing, that I’d found a way to adjust to my reality. I honestly thought it would only take a few minutes to fill out the #MMSelfies form as part of the millions missing campaign for ME/CFS Awareness Day. The form developed by Emerge Australia asked for a response to a simple question – What are you missing from?
There are so many amazing people around the world working on ME/CFS research, advocacy and community support. The first site I will highlight is How to get on. Its incredibility informative especially for those in the USA and its also beautifully illustrated.