Aside from the symptoms, the biggest challenge with an invisible illness like ME is not being understood, because other people can’t see that you’re ill.

This communication gap can be devastating and leave people feeling deeply alone and abandoned.

When most people see you, they see the ‘up’ version of you, when energy levels are sufficiently manageable that you can cope with meeting friends or family or visiting the doctor. For that window of time, you may look fine and appear to be acting relatively normally.

People who spend a lot more time with you - carers or those you live with - will see more of the reality of the downs and not just the ups, and especially the delayed impact of Post Exertion Malaise (PEM). But someone who interacts with you only for a short while won’t see that, so it’s understandably difficult for them to comprehend what’s happening, especially when they haven’t had experience of it themselves.

To be understood and taken seriously, we therefore often have to ‘perform’ illness, i.e. show visibly that we are ill and not healthy, even though the illness itself is fully real regardless of the outward showing.

There’s an expectation that someone who is ill is visibly so, which again corresponds with most peoples experiences of being ill themselves. So if you’re not, even just for a while, it can cause confusion, disbelief and even anger or resentment.

Sadly this can also extend to attacks on ill or disabled people when they share positive moments, even innocuous ones such as smiling photos on social media. This can lead to people closing themselves down to avoid being pilloried, even as their illness further isolates them.

A small minority of people do fake things like illness, for various reasons, and their behaviour does justify resentment. Unfortunately, invisible illnesses present themselves as examples of this, of someone trying to cheat the system, even though the illness is very real and the sufferer is telling the truth.

There are now more examples in the public awareness of people not having visible symptoms but still being ill. Cancer or leukaemia can be invisible, but very few people would say that someone wasn’t really ill as a result. But fatigue is more nebulous and hard to grasp, especially when it’s commonly used to just mean tired.

This creates tension around how to approach different situations. In my daily life, I try to just deal with what’s in front of me and to forget being ill as far as possible. When I am able to get out the house, I don’t want to be more limited than I am. I want to use this moment to the max.

If I’m going to be around strangers then I don’t need them to understand. In fact, it’s often easier if they don’t realise there’s an issue, because I don’t want to spend energy explaining or draw unnecessary attention.

But if I’m with people where it does matter - doctors especially, or during benefit applications, it’s essential that they do understand the situation.

When I go to the doctor for ME related things, which I avoid unless necessary, I don’t want to be looking my best. I want to show, as far as possible, that i’m ill. So I might overdo things the day or two before, to put myself in a low energy state or crash, to make things visible. This is a difficult balance, because if you put yourself in a serious crash, there’s always the risk of causing significant long term damage. But if your medical care or your financial security depends on the person you’re meeting understanding what’s happening to you, it can be a calculated risk that’s worth taking.

It can feel like this is being dishonest, but I don’t think that’s the case. It’s an attempt to help communicate the reality of the situation to the other person in a language they can understand, by showcasing the visible side of our mostly invisible illness.

It can also feel embarrassing and shameful that we should need to perform in this way to simply be believed about such a fundamental aspect of our own body and experience. It’s deeply upsetting and isolating.

I believe in future our medical and social understanding of invisible conditions like ME will improve to the point where patients are believed and understood through their words, without needing to harm themselves to be taken seriously. In the meantime, for everyone in a similar position - hang in there, we’ll make it through together.