When I first got ill with ME, it was deeply confusing. In the first weeks I kept thinking I just needed to rest a bit and then I’d recover fully. Even as weeks turned to months and then years, it still felt bizarre that something wasn’t working in my body like it used to, that the days where I would just magically heal were gone.

With nothing really concrete to point to (although research like DecodeME is slowly changing that), when doctors didn’t know either and it’s difficult for even loved ones to understand, it’s all so nebulous and leaves you unanchored.

There’s always that thought that it can’t be that serious if you can’t even say what it is. And if it’s not visible, then there’s that further doubt that maybe it is all in my head, maybe i’m not really ill, i’ve just gone mad. That one day i’ll wake from this bizarre living nightmare and be back to normal again.

The thing is, you are genuinely ill.

Not in the ‘rest up for the weekend and you’ll be better’ sense that you’re likely used to. Genuinely, truly ill with a physiological condition.

In some ways, facing this is worse than holding to the hope that, with just another nights sleep we’ll feel better. It feels like a curse. Concrete boots that drag us below the waterline of ownership over our body and shift us into a category of people that we might not wish to be in - those who are chronically sick and disabled.

But it’s only by finally acknowledging what’s really happening to us that we can start to work from where we are, including taking steps to support physical recovery and dealing with the grief that comes with our life changing considerably.

Give yourself permission to be sick.

That doesn’t mean being stuck forever - you’re a person with an illness but you aren’t the illness.

Instead, let the acceptance of where you are right now lift the burden of trying to be something you’re not. Let yourself truly rest. Then start your healing journey from this place of presence.