Here’s the thing. We have to adjust. We have to adapt.
If we didn’t we would have no life.
Here’s the thing. Some of us and arguably most of us are masters at hiding our extreme symptoms. Pain, weakness, dizziness, visual issues and the other 99 problems that come with having a chronic illness or if you’re really lucky multiple chronic illnesses.
Only earlier today, after an episode of paralytic fatigue I was left having to crawl around the house because I physically could not stand up. Was anyone in? No. Did anyone see? No. Does anyone ever see?
Sometimes. Last Thursday they did. But often I can adrenaline myself up to stay upright for only small interactions. Or my family doesn’t actually witness it despite them being in. (The countless times I’ve had to crawl up the stairs comes to mind here).
Does that mean it’s not that bad? No. It is that bad. I have major issues getting more pain medication because I’m on a dose of gabapentin that most doctors wouldn’t prescribe to someone so young – one that makes pharmacists repeatedly check it is correct. Despite this, I’m still in a lot of pain! Pain that even with double dosing OTC meds does not ease.
It means I’ve learnt to hide my pain in response to being called a hypochondriac, being disbelieved. Being moaned at for complaining so much, for being so negative. The thing is it’s easier to not say. Even without the above. It’s often easier just to pretend.
But our pretending does not mean it’s not that bad and the second we’re out of sight the pain will often increase tenfold – in response to hiding it for so long. This can present as painsomnia – a phenomenon leaving chronic pain suffers unable to sleep because we’ve spent so long during the day trying to ignore our pain.
It is that bad!
Another thing I would like to point out is the differing points of references between someone with chronic illness and someone without. I would also like to point out that even with the same chronic illness we all have different points of reference, different priorities and different struggles.
Different points of reference mean we tolerate more. It also sometimes means we don’t realise how ill we are until it really hits – hence oftentimes over pushing to the max as well as sometimes having to act on the side of caution if we have big commitments coming up.
I’m going to repeat again. It is that bad!
So please, be considerate. Be understanding. Even of what you can’t see or understand. Listen to us and help us. Don’t underestimate our struggles. That’s all we ask of you. This battle is a difficult one. A little kindness can go a long way.