the pledge of the sick person.
I’ve got Ehlers Danlos Syndrome. It has manifested in a particularly brutal form of combined acute and severe chronic pain. To give you some perspective, one or several joints in my body are, at any given time, in some partial or full dislocation. That, plus near constant headaches, ulcers, IBS and a general threat of aneurysm make daily life massively unpleasant.. but I digress. I’m not here to give you a primer on my disease, you can google it.
Basically I get to feel like I’m actively dying without actually, you know, dying.
While I don’t wish pain and disease on anyone, there is this whole idea that a burden of this level of disease makes you noble, or wonderful, or that it wipes anything bad you’ve done off your ledger.
I really want to disabuse you of some of this bullshit.
First, I am still me - good, bad, and sometimes exceedingly ugly. My illness has not transformed me into a dewy, aura-surrounded kindness infused light of positive will and goodness. I’m not taking up motivational speaking any time soon, because I’m a shitty at even believing in “role models”.
I’m still, I think at base, a good person - but this didn’t wipe out my bitchy, insubordinate side.
It hasn’t granted me with Good Things - rather it’s magnified some of the nastier aspects of my person. I’m less patient now - and I didn’t have a lot patience to begin with - and I’m generally crankier. I’m less likely to smile and nod and just simply put up with what I think is bullshit. The illness and the pain has wiped that veneer right off.
I have even been jealous of people with things like cancer because if I had cancer then we’d know what to do with it. Which I think maybe gets me a one-way pass to hell, I don’t know. But there is a terrible futility to my pain and to my suffering that is difficult for me to understand.
If you didn’t like me before, you sure as fuck won’t like me now.
This is not a battle, and I am not a warrior. It’s just my so-called life. I do all this endless physio and rolling around and adaptive behaviour because this is a permanent situation for me. I will not improve; I will probably get sicker.
But. As a sick person, I am not absolved of any past bad behaviour. If I have attacked or maligned you, abused my position, broken the law or hurt you, that was me. I have no right to think this gets me a pass. If I have shown you no respect or compassion, I have no right to expect it from you.
Further, if I can’t fulfill my responsibilities or commitments, I have no right to ask anyone to fill in, work harder, hold something in wait for me to get it together, or similar.
If I am too sick to do my job or keep up my end, it is my responsibility to either step back, or figure out how to get it done without burdening others.
And finally, there should be no prize or round of applause for me for simply persisting to exist. This is not an achievement, I am not an inspiration, example or martyr. I am a patient - like millions and millions of others. I’m hella sick. I’m not special.
My right is to get through this illness and survive however I see fit. My responsibility is to keep the collateral damage and impact to others to an absolute minimum.