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