invisible illness

Just because you could doesn’t mean you should

~ Helen White ~ Leave a comment

It's all too easy to be guilted into overdoing things; to feel judged and criticised and like we are letting other people down...and why do we always push ourselves, why do we feel we always have to be productive or do at least what we are capable of doing right up to the limit of our energy, using up every last iota of ability that we have? What if we have to learn a a whole other way of being in order to get ourselves out of an ME/CFS crash...what if it's about learning its OK, in fact essential, to hold something back in reserve for ourselves, in fact first and foremost?

Unmasking the “and this…and then there’s this…and this…” long symptom list of chronic conditions

~ Helen White ~ Leave a comment

If you’re in one of your health troughs, your very worse of days, weeks or months, the times when you’re a fortune hunter out there on all the forums and websites, ever hoping for a breakthrough piece of insight, remember this too will pass and that it’s not always going to be this intense, though it sometimes feels like it is. And importantly, you’re not all alone. There are others like you, with their two hands overspilling with overlapping and often utterly bewildering symptoms that get precious little ear from medical professionals. We may feel isolated in our struggle but there are a lot of us out here.

“You’re looking really well”: The curse of the invisible disability

~ Helen White ~ 2 Comments

The way human society is devised, the very foundation stones of its connectivity networks, is based on us all having relatable, sharable situations and people being able to recognise when another person is in strife. When you have chronic conditions that not only isolate you from other people due to an equally chronic lack of spoons, also causing you to be misunderstood by other people (as people tend to assume you are making up lame excuses when they can’t see the energy deficits you are having to work with!) then having the additional pitfall of nobody being able to recognise that you are ill, because your disabilities are hidden from sight, even when you finally come out of the woodwork, is the final sting in the tail.