Communicating about disability - when there is no shared reference point.

Often I blog about self management with the aim of maybe helping someone experiencing something similar. But today I'm writing mainly to non-disabled. To the people trying their best to understand our reality.

One of the challenging things about communicating with loved ones about hidden disabilities or symptoms is that most will have no concept of what we are trying to say. No shared reference point on which to build understanding. And so the natural thing to do is build their understanding on a different reference point and...we get confusion and misunderstanding.

Like me trying to say I can be so fatigued that my legs can't hold me up (wheels only on those days!), and them saying 'I know what you mean, I feel like staying on the sofa after a long day'. 2 completely different things. Like...so different I don't even know where to start explaining it.

Severe fatigue doesn't mean 'feeling like you don't want to do things' - it means being unable to.

"Ah, but I've seen you say that, and then you do it!"

Ok, so I'll rephrase that to "being unable to without significant and severe consequences".

When a healthy person is tired from a long day, but have to get up and do something anyway, the effect is: an unpleasant feeling, a certain amount of grump, and possibly some minor aches and pains. But that's about it.

When I'm too exhausted to stand upright, but I have to do something anyway, a burst of adrenaline will temporarily allows me to do it. But you may well not see what happens when that adrenaline surge has faded, by which time I'll almost certainly have retreated to my room or solitude. When my symptoms will be a whole heap worse than before - because energy I didn't actually have - or was reserved for essential functions - has been used up.

This will be different for everyone, but for me, the net effect will generally end with me unable to move without shaking with the effort, unable to form a sentence in my head, completely unable to speak, and struggling with basics like swallowing my own saliva. (You can forget trying to eat or drink until I've done some recharging). Hitting this level repeatedly over a few weeks reduces my capacity long term (possibly permanently).

The two experiences aren't remotely comparable - and in trying to relate by comparing, the actual effect is to make the disabled person feel dismissed, unheard, and disbelieved. It actually prevents understanding and effective support rather than promoting it.

So if you are trying to be supportive of a disabled person by relating to their fatigue, and they kinda bite your head off, this is why. Understanding can be reached - but it is a process and learning curve which can only be followed when starting from 'actually, that is so far outside my experience that I don't know how to relate and will try to learn.' Start with believing what the disabled person says about the severity of their symptoms - and build up from there.