It's not the ache behind the eyes,
the loss of appetite or
the painful limbs.
The pallid skin or the freezing hands.
Neither is it the lost years.
The exams left untaken,
The high heels left unworn,
or the broken dreams.
Rather, it is the perception of others,
their lazy comments or ignorant
judgements. Their unwillingness
to understand. To accept.
Their incessant questions and their hurtful words
muttered under their breath, which we
broach without comment.
These, not the fatigue nor the pain, are the things that
eat away at our lives, that mark us out
that keep us up at night.
This is brilliant - and (sadly) so true. I find it strange that, while my symptoms are constant and debilitating (yet thankfully less so now than they have been), it's the ignorance, the cruelty, the hurtful comments, that anger me the most. I feel that I can, as much as is possible, accept the fact that I'm ill. But what I can't accept is people's attitudes - because after all, I can't change my illness (as much as I'd like to!), but other people could be more empathetic, or at least less abusive. I hope that with awareness, with blogs and with time, one day things will be better. But until then, at least we've got each other! :) You're a really talented writer and I look forward to reading more.ReplyDelete
Thanks so much for your comments lovely!Delete
I had a bit of an epiphany during my "cure" when I realised that I can sometimes spend a lot of time worrying about upsetting other people by talking "too much" about M.E. when in fact those same people can tend to be the ones who hurt my feelings with their lack of understanding! So I've made a little mid-year resolution to try and be more open and honest about my health with those around me. Not necessarily going into all the doom and gloom details every time we meet, but nor just brushing aside the reality of things with a simple "I'm ok, thanks" when they ask.
I find it already helps so much to get these thoughts out onto "paper", it really is then a cherry on the cake to be able to share them with fellow sufferers...and to hear your perspectives too. As you rightly said, thank goodness we've got each other!