Inspired by a conversation about how we are ALWAYS SICK with a good friend the other day; I got to thinking
about the frustration I suffer on an almost daily basis in expressing the
complexities of my condition to the wider world. It's no secret that the
majority of chronic illnesses, and my own particular disease, are 'invisible'
due to the majority of symptoms going unseen. It can therefore be incredibly
difficult for those outside of the condition to distinguish if we are having a
good day from a bad. The problem here is that often a good day can turn to a
bad one within moments of one another. With startling regularity I can wake up
feeling top notch (or at least 'normal'), to borderline ADMIT ME TO HOSPITAL
IMMEDIATELY within minutes.
Chronic illness, and in particular IBD, can be so unpredictable that
planning anything is frequently an impossibility. I often feel fine to agree to
your party in a week’s time because I'm fine NOW, but please don't be too
flabbergasted or disappointed when I tell you a few hours before said event that
I genuinely can't make it because I literally can't get out of bed.
One of my main gripes on this topic is the irritation people around us
often seem to feel on hearing that we've taken a turn for the worse, or simply
that nothing has changed since the last time they enquired about our health.
I'm often asked how I am and when I venture to give an honest answer I'm met
with those 'here we go again' eyebrows, a glaze over of the eyes or an instant
change to the subject. I’m often left feeling like a killjoy, an attention seeker
or the Fun Police. Let's face it, illness isn't ‘fun’ to hear about over a cup
of coffee or at the office water cooler, or during intercourse, but sometimes
we get tired of telling you everything is fine just to appease you. If you
think it is depressing hearing about
our disease for 30seconds, then trying living with it 24/7.
I wouldn't wish my condition on anyone, but what I do wish for 2015
and beyond, is that people around me would attempt to understand that this
isn't fun for me either. In fact it's the complete opposite. It's walking
through muddy puddles then discovering a hole in my welly boot. It's forgetting
to have bought milk when just I've made my tea. It's being forced to listen to ‘Ironic’
by Alanis Morrisette on repeat. You get the general idea. I didn't choose the
Crohn's life, it chose me and my defunct insides, and my social life is regularly
left paying the price. It's difficult enough living with the knowledge I'm suffering
from an incurable illness without the seemingly consistent lack of empathy.
I know I can't rid myself of my Crohn's Disease but I can try to
medicate the diseased attitudes towards it.
Happy New Year xox
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