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?

Easy, just type in career, walks, dinners, holidays, movement without pain or repercussions, time with friends, giving your time generously, not paying a price for everything. That’ll do to get the general gist, no need to go on and on, its only supposed to be 150 characters. But instead I just stared at the blank box. A list didn’t seem sufficient, it couldn’t encapsulate what it was like to be missing from all those things. 

Glancing from that blank box to the bedroom window I could see it was a radiant, crystal clear day, one of those change of season days were the breeze has just a hint of the coming winter. I could hear laughter and music coming from neighbouring apartments and casting my attention to the tv I watched as a reporter asked a picnicking family about their weekend plans now that the state government had relaxed some of the social distancing regulations. The interviewee was beaming with happiness that she now had things to look forward to again. 

While I pondered that simple question my partner was on a 10km walk along the beach and the more I tried to come up with an answer the more it felt like I was trying to digest a giant emotional layer cake. The first layer has the sweetness of expression, of being seen, but facing it forces you to bite into a layer of bitter anger that leaves an after taste of pure sadness. 

The answer I eventually settled on was-

Missing from being somebody in the world. Being somebody who doesn’t have their hopes and dreams on hold.

So, obviously, there’s more adjusting to be done. Especially since my little emotional roller coaster made me want to throw my laptop out the window, and I really love and need my laptop. But the whole point of the awareness campaign is that it’s not acceptable to be missing from the world. To all the researchers and campaigners who are working on ME/CFS I thank you for the ray of sunshine you pour into our darkened rooms.

To those who boldly and bravely tell your stories regularly or for the first time take care of yourselves and take solace that you are heard, you are seen, you are not alone. 

In case you’re wondering if the emotional roller coaster led to an actual piece of cake –  There’s eating your spiralling feelings and then there’s eating to jolt yourself out of the spiral.

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