Aid4Amara YouTube Channel

Sunday, 7 August 2011


The truth, it can be uncomfortable and confronting.  It is certainly not what we want to face constantly.  Most of us think we're unflinchingly honest, but really we hide the truth away behind hair dye, manicures, makeup, spray tans, expensive clothes.  Or even without those every day rituals we take for granted as routine, we hide the truth with little white lies, to ourselves, to others.  We don’t even realise we do it and we don’t mean anything malicious by it, it’s just the way we get by.

I’ve always been honest, truthful, genuine, and authentic.  Or at least I was mostly.  I functioned within the normal societal expectations of ‘spin’, hiding the truth a little behind the fa├žade of a beauty regime, behind tact. 

So imagine being stripped of those pretenses, imagine having to confront the stripped back you every day.  Imagine being so sick that even a shower can be too hard some days, so you certainly can’t manage makeup, spray tans, manicures, expensive clothes or some times even brushing your hair.  Even the most secure in their skin would find it particularly daunting to age and put on weight, lose muscle tone and grow unearned wrinkles.

Every day those of us with CFS/ME face this and those of us who contracted it severely and early, also face the likelihood of a future without children, without a partner, without security or a home, mostly alone and without independence.  That is a lot to face every day, through pain, exhaustion and illness.

So when I write, I try to write my truth.  To give voice to what it is to live with this illness.  But before I got sick, before I suffered for years on end, before I watched my future options fade away I could hide from my truth a little bit.  I could make myself feel better with makeup, with a shopping trip, with a girl’s night out.  Now there is no escape from the truth.  And I say this not to garner sympathy, but in the hope I’ll make you understand that I don’t mean to confront you with a bleakness that is too much.  I don’t want to scare you away with my truth.  But I do want you to understand that with constant suffering comes desensitization and we have become so used to facing the ugly reality every day that we don’t hide from the truth, we don’t shy away from it and we certainly can’t escape it. 

So when I write of the bleakness and the darkness, it is the truth, but just know there is some lightness in there.  There are days when I laugh, days when the pain is a little less and days when I can stand or walk without falling over.  They are not often, but they are there.  And above all else, mostly I am okay.  We are okay.  It may not be pretty, but I’m still kicking on.