Alliance - Working With, Not Against, Your Illness
I generally tend to look upon my body with a fair amount of disdain and anger – as I’m sure every #spoonie and fellow chronically ill/disabled person does. The amount of times I’ve looked in the mirror, cursing how weak and broken I look, letting my fury at the injustice of it all bubble up inside me; It’s too much to count.
I’m currently going through a very rough patch health-wise, both physically and mentally. A slew of new issues and symptoms have been plaguing me recently, and as a result, my depression has been pulling me into a pretty black hole. More than anything, I’ve been angry. I think that anger has become one of my primary emotions in the past five years.
Why me? What did I do to deserve all of this crap? And why can’t my body just pull itself together and sort things out? Why can’t things just go the way they should?
That’s a lot of ‘why’-questions. And there are answers to none of them. Nobody deserves chronic illness – those of us that have them are just lumped with it. It’s the way of life. Things aren’t always fair, and there’s no changing that fact. Trying to come to terms with that fact, and make my peace with it, is something I am continuously working on in therapy, and most likely will be for a while.
I once went to see a piece in the theatre, and the protagonist of the play had an auto-immune illness, like myself. I remember watching his monologue at the beginning of the play, and one of his lines struck me so deeply that I still remember it word for word: ‘How can I fight my disease if my disease is myself, if it’s part of me?’ His performance left me in tears.
That’s the thing about auto-immune diseases. I have three diagnosed diseases, two of which are auto-immune: JIA (Juvenile Idiopathic Arthritis) and CRMO (Chronic Recurring Multifocal Osteomyelitis), and they’re funny little beasts. My diseases come as a result of a too-strong immune system – one that attacks itself when there is nothing else to fight.
My disease is me, and I am my disease. I can’t fight myself. I’m stuck.
A few summers ago, I was ranting about this exact issue to a friend of my mothers, who is a nurse. My ankle was incredibly swollen, and I was in the middle of a flare. It got to the point where I was so angry with my ankle for the pain it was providing me, that I started swearing and yelling at it. The ensuing conversation changed my perspective permanently.
My mother’s friend asked me why I was angry with my ankle. I told her that I was in pain. I told her that it was my body’s fault, and that if it just did what it was supposed to do, then everything would be alright. She explained to me that my ankle was just as much of a victim as I was. That it was trying its best, and that if I were kind to my ankle, it would start to feel a little better too.
Initially, I thought that it sounded like some voodoo-horseshit. The kind of thing every member of staff at the hospital tells you to calm you down. But I looked down at my ankle, and I apologised. I physically said ‘I’m sorry’ out loud, and acknowledged that it was doing a good job. The pain didn’t go away, but I felt like I’d made some sort of agreement with my ankle. From that day onwards, our relationship was a little less tense.
It reminds me of a phrase my closest friend uses whenever we have differences in opinion: ‘It’s you and me against the problem, not you versus me’. Just like arguments, it’s me and my body versus the diseases. Not me against my body.
I started trying the same method with my panic attacks. Instead of fearing them, I began to get used to them. They are still, of course, awful, debilitating experiences. But nowadays when I sit on the bus and the adrenaline overrides me, I sit back in my seat, close my eyes, and ride it out like a wave. I tried to see them in a different light: Rather than being an attack, something terrible and scary, I tried to see them as a warning sign from my body that I was doing too much and overwhelming myself. Kind of like a built-in alarm system.
I can’t say that I’ve befriended my disabilities or mental health problems, but I’ve developed a more civil relationship with them. An alliance, if you will.
Nobody can tell you to accept your illnesses, or to just ‘get on with it’ (though they most certainly will try). But it has helped me more than I can say to acknowledge the work my body is trying to do for me, and to give it some credit. It’s trying the best it can for the circumstances. And isn’t that all we can do, too?
Try to give yourself, and your body, a little break from being angry. Use that energy to form an alliance with the thing that tries to keep you up and running, despite it not always doing the best job.
(Picture credit to @natashalipman on Instagram)