The Invitation

Ah, the invite. The one thing that leaves me both quaking in fear whilst simultaneously buzzing with anticipation. But to accept an invitation is a dangerous undertaking, for while the heart is full of hope and willingness at the prospect of going out into the big wide world and meeting actual real life people, the body’s attitude to anything that requires a modicum of movement, energy and wakefulness, is “meh.” This is because the heart deals with wishes, desires and expectations, whilst the body is steeped in realism. It knows that at any given time, from being invited to accepting that invitation, it could cease to function at the click of an arthritic finger. And so the invite becomes both a perplexity of joy and a thing of dread. The dread of disappointing others.

The truth is, whenever I accept an invitation, two things immediately start to happen. The first is that I am grateful that anyone has even remembered my existence on this planet, whilst my second response is, “how do I can get out of this? It’s not that I don’t want to go, it’s just that I don’t want to go. Or rather, I don’t want to deal with the consequences of going. As anyone who suffers from any kind of chronic illness, knows, getting up, showering and then getting dressed, equals a 26 mile long marathon sprint. So readying oneself for a night out, soon becomes akin to going 10 rounds with Mike Tyson. And it’s not just the fatigue of dressing up and dolloping on make up just to look like a street walking geisha girl, it’s the pain that every movement makes. And by the time I’ve finished getting all dolled up, I’m far too exhausted to do anything but crawl back under the duvet and wrap it around my exhausted meat-sack like a burrito.

Now let’s go back to the last line of the first paragraph. The part about the dread of disappointing others, because that’s ultimately what will occur. When accepting any kind of invitation, we are making a commitment, a commitment dedicated to the cause of painting the town red, (and by that, I mean partying, not going on a murderous rampage through town) going to see a movie, dining out at a restaurant etc. Now for the healthy, this is an easy task to achieve but for those doped up to the eyeballs on so much medication that we rattle when we walk, there is a danger that illness will raise it’s ugly head and stick two fingers up at the notion of even leaving the house. For the invitee, this is a problem. It seems that they cannot fully comprehend that sickness does not adhere to a time schedule. That there are no mystical witch doctors or one eyed Oracles that can predict when we are going to become ill. It simply happens when it happens.

Unfortunately, whenever there’s a cancellation, the invitees seem to take personally the fact that we my not be up to twerking for 7 hours on a dance floor. There are even those who would come to the conclusion that we are simply using our disabilities as a form of excuse. Just recently, a friend berated me for cancelling a night out even though she had been well aware I had been unwell the previous few days. After screaming that she would no longer be organizing any more days and that I could make my own arrangements from now on, she threw a temper tantrum with such apoplectic rage, that toddlers everywhere threw down their dummies in disgust. And you know what? That was fine by me, because if you’re going to be put out by the fact that I am incapacitated through no design of my own, then maybe it’s better that we’re no longer friends.

Of course I get the frustration of planning and organizing an event only for it to not come to fruition but a little compassion and understanding goes a long way. Do people really think that staying home and looking at the four corners of our cobwebbed enclosure, is a better alternative to meeting friends, having fun and laughing until we have to reach for the Tena pads? Because I can tell you, it isn’t. Having a chronic illness is a lonely experience to begin with. We feel enough guilt and sadness when we have to decline any invitation. But it becomes an even lonelier place when the people we consider to be friends, think that we are doing so because we’re either lazy, cannot be bothered, or are just being inconsiderate. Worse still, and what hurts the most, is the assumption that we are using our disability as some kind of ‘get out’ clause.