When you first get ill with ME, it’s like a fever dream. What on earth is going on in our body? We can’t do even basic things that we took for granted. Walking, even talking and thinking, become impassible mountains.

Every day seems like this might be the day the nightmare ends. Surely i’ll have a good nights sleep eventually and wake up rested?

When that doesn’t happen, your attention moves elsewhere. Meditation. Supplements. Heart rate tracking. Gratitude journalling. Surely, if you do all those things correctly, you’ll recover?

But then you don’t. You plateau, or start going backwards. It moves from acute to chronic.

What if you can’t fix yourself? What if you’re broken?

This can be a deep source of shame and isolation.

Thoughts come: maybe I’m not clever enough to solve this mystery, not focused or driven enough, or I simply don’t deserve to get better.

Feelings, too: who am I if I’m not out in the world achieving, helping people, or being strong? Our self image crumbles, the pain of a proud ship turned to flotsam.

It’s further isolating because of the barrier of understanding between us and people who haven’t got ME. We can point to a broken leg and say - here, that’s why I can’t walk. But we can’t point to the fatigue, we can only hope people infer it from our behaviour, which is difficult if they haven’t experienced any significant loss of capability themselves.

It’s easy for them to assume we just need to try harder. And its even easier for us to believe that too. We may have prided ourselves on our ability to do exactly that - to try harder, to get things done, to be independent. So when that doesn’t work - when it becomes clearly counterproductive and we’re forced to stop and rest - it’s a double blow. This was what we did, it was who we were. Maybe we used to think that other people just needed to try harder or focus more. Having that viewpoint proven so clearly wrong feels humiliating. And regressing back to being a dependent feels shameful.

It’s important to remember that a lot of this shame is internal. When we look at people with different illnesses such as cancer or dementia, there’s no shame attached. Instead it’s a source of sympathy and compassion. The same is true with ME and we deserve a similar response, especially from ourselves. That may not be what you’re getting right now, but I hope that as research and awareness continues, the response to ME will move in line with more well known diseases.

In the meantime, sometimes we just need to let go of it all for the moment. Acknowledge feelings, especially the challenging ones like shame, without getting subsumed by them. We are not our shame and we are not our illness.