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.
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.
Two things can be true, I can empathise deeply with peoples loss and at the same time feel the sting of watching others mourn what has been lost to me for so long. Those of us who have been housebound for a while understand their grief and bewilderment that this could be their lives now, so small, so confined, everything tantalising just out of reach.
In the midst of such a world-wide crisis I’ve been struggling with how to put my own fears into perspective. To have any sense of objectivity about where my situation fits along the scale of – be kind to yourself, it’s a lot and get over yourself, you have so much to be grateful for.
There has never been a good time to have ME/CFS but there has definitely been less stressful times to have a chronic condition and an uncooperative immune system that continues to have an open door policy despite my objections.
When you have a chronic condition that separates you from the world there is enormous comfort in sameness. With so little energy it’s hard to know how to find a way to help others but we can help each other by sharing our stories.