Tell Lulu, Easy on the Chronic

The Hot Chick is an amazingly brilliant and hilarious film, and as such I found the above quotation from the film to be the perfect thing to use for the title of this post about how I’m dealing with being diagnosed with a chronic illness. I haven’t decided if my maintaining a sense of humour about all of it is a good thing, or just a sign that I’m still a little bit in denial and the realities of it haven’t completely sunk in yet. I’m sure my counsellor will have some thoughts about that when I see them next…

So anyway, after months of pain, fatigue, tests, ‘maybes’, and confusion, five days ago I got my diagnosis: spondyloarthropathy. Basically this is a big, fancy, scary word for a group of genetic autoimmune disorders that result in arthritis in various parts of the body. Mine is currently affecting my hands and feet, and I have chronic pain in my legs and hips/lower back. Further tests over the next few weeks will hopefully tell the docs which type of spondyloarthropathy I have, but perhaps not. Either way, I’m relieved to finally have something to call this thing that is happening to me.

Relief is just one of the many things I’m feeling about this, though… and to be honest it’s not really the dominant emotion I’m experiencing. What else have we got in this bag of tricks… let’s see… anger, frustration, sadness, uncertainty, fear, and a (at the moment miniscule) bit of acceptance. I feel like I have lost the genetic lottery. I think ‘why me?’ and I get angry, but angry at what? There’s nobody and nothing to be angry at except sheer bad luck, and the absence of someone or something to blame makes me even more frustrated. I feel like it sinks in a little more each day that my future is going to be different from what I thought it would be – I feel like I’m in mourning for my love of delicious cocktails which I will no longer be able to drink, and confused as hell about how strong my emotional reaction was to my specialist telling me how crucial it is that I absolutely avoid pregnancy, even though I was pretty sure I never wanted to do the pregnancy thing in the first place. Ever had a specialist look you in the eye all serious-pants and repeatedly say to you “do not get pregnant”? Heavy shit. But it still doesn’t feel real at all… I’m not chronically ill, not me, this shit happens to Other People. I’m sad and frustrated by the fact that this is not something anyone can cure, but rather something that I’m just going to have to learn to live with. That, in turn, is where the tiny bit of acceptance comes in – but it is a begrudging acceptance, a ‘well there’s nothing that can be done to change it so suck it up’ rather than an ‘okay, so this is part of my reality now, and I’m at peace with that’. I’m afraid of what the next few months might bring with them as I begin my treatment and face the realities of what that treatment might mean – will it work, will I have fun side-effects, what things do this treatment mean I can no longer do, all the other fun scary thoughts. Mostly, and finally, I just feel incredibly WEIRDED OUT. I’m a “chronically ill person” now. When did this happen? A year ago I was just your garden-variety stressed-out-but-happy PhD student doing PhD student-y things, and now I’m that PhD student plus regular-medical-appointments-and-physio-appointments-and-all-the-appointments-and-all-the-pain-and-a-funny-waddly-walk. I’m thinking of getting a penguin onesie to wear around – you know, embrace the humour and whatnot. Whenever I catch myself complaining that my back or my legs hurt now, I just start laughing. Of course they hurt, girl. Welcome to your new Reality.

So I have been welcomed to the Chronic Illness Club, but I am still awaiting my gift basket. My mind is a big, overwhelmed bundle of ‘okay, this is happening’ right now, and frankly I have no idea how I feel about any of it. Alls I know is I have superb family and friends all around me, and will reiterate again (as I have done many times on this blog) just how amazing my thesis supervisor is. So many things seem very up-in-the-air at the moment, but it’s a huge relief to know that everyone’s support and understanding is something I can be sure of. Love to all of my people, and to the other members of the Chronic Illness Club out there: seriously, where is my gift basket?

E. xx

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