Of Beauty and Rage

No one tells you about the rage.

I wish someone had. I wish when I was first diagnosed with lupus that someone wise, a doctor, a counsellor, a pastor, had sat me down and said, ‘Now, Steph, lupus is going to change you as a person. You will come to resent your own skin and what is happening inside it. You will be furious at everyone else who is helpless to help you, and at yourself in your uselessness. You will probably get mad at God too. And it will probably never go away.’

Yay. Just what I always wanted.

Chronic illness is the exclusive club one can join any time that no one ever wanted to qualify for. Membership guarantees you complete access to pain, misery and loss, and while you get support from others already inside the club, it doesn’t change the fact that you’re still in this club. And, like the Hotel California, you can never leave.

That changes you as a person. From the first dawning of realisation—‘Oh, this thing isn’t going away’—to the horror of acceptance—‘What do you mean, there’s no treatment?’—chronic illness has a way of eating away at your soul, much like the osteoporosis is eating away at my bones.

I don’t know about you, but the rage, the quiet, relentless rage, eats away at me too.

Why can’t I climb stairs anymore?

Does this mean I can never travel again?

Is having children too risky for me?

What if I have to give up work?

What will I have to give up next?

And there’s the classic: Why, God, why?

Much of my rage is grief-related, if I’m honest. I have lost big chunks of the Steph I used to know. I have become one of those people who needs ‘reasonable adjustments’ at work, ramps and lifts when I go out, changes made to orders at restaurants…in other words, I have become cautious, constrained, picky, high maintenance, a person I never wanted to be.

I get so sad about this. There are days when the sadness is not too bad, but other days, especially on bad pain days or sleep deprivation days, the sadness rushes in and whips me around like a whirlpool. On those days, it somehow feels easier to get angry than to be sucked into the screaming vortex below.

Don’t get me wrong, there’s plenty of beauty on offer even in chronic illness. I have plentiful music in my life, the wonder of writing, the love of close people (and a furbaby), my God who is ever by my side, a green garden and a view of the sunrise. It feels important to remember this daily beauty and keep it ever-present in my mind.

It is equally important to acknowledge the rage. Rage and beauty are not at odds with each other; they coexist, like thorns on a rose. A rose’s elegance is not diminished by its thorns. Life has both wondrous and terrifying things to offer, and I am learning, slowly learning, to embrace both.

It might sound strange, anti-Christian even, to think of embracing rage. But there is remarkable room in God, acres and acres of room, for our pain, rage, grief, terror, weeping, and, when all is spent, echoing silence. And he is there in the silence.

God’s arms stretch wide enough to reach around the whole world; they are wide enough for your rage. Share it with him. He is waiting for you.

What has been your experience of rage? What have you lost in living with chronic illness? How helpful is beauty and prayer and silence in sitting with your rage? Share your story. Let’s have a countercultural conversation.