When I first became chronically ill, I turned to writing to cope. I wanted to rip open and lay bare all the messy painful parts of my illness, and help to educate people about the many difficulties sick people face – physically, emotionally, financially, and politically. I hoped that my writing could help give voice to those who are silenced by illness, and ensure that our existence and our needs are taken into account, especially by those in government.
But I found that, no matter how many words I used, I couldn’t truly do that justice. The experience of pain is universal, and yet, it isolates us because it is so difficult to communicate. Pain scales fall short, a thesaurus of adjectives is inadequate. We can understand our own pain, but we can never truly grasp another person’s. As Stephanie de Montalk said, the only person that can truly understand chronic pain is a fellow sufferer.
Without knowing how to communicate my experience, my world shrank. I became isolated, trapped in the limitations of my body, and struggling to communicate how that felt. The ways in which I connected with the world previously were unattainable. At the same time, the world started feeling increasingly hostile to me: I began to feel invisible politically, dismissed by many as a faceless drain on the system, as opposed to an equal citizen.
How do you play a part in, or push back against, a world that can feel so hostile to you for being in pain?
So how do you fight back? How do you articulate your experiences as a chronically ill person in a way that other people can understand? And how do you play a part in, or push back against, a world that can feel so hostile to you for being in pain–and not your illness for causing it–that some of the greatest political issues of our Trumpian times is whether or not healthy people should have to pay for the treatment of sick people at all?
If these are questions that resonate, here are two theories–both written by women with chronic illnesses–which have helped me be able to understand and put into words some of my experience as a chronically ill woman, and feel as if I am making a difference in the world, even if I can’t physically protest.
Firstly, Christine Miserando’s Spoon Theory is a way to quickly and easily quantify limited energy, which often plays a huge part in the life of people with chronic illness. Spoon Theory helps us communicate that by using spoons as a metaphor for units of energy, almost like segments on your smartphone’s battery meter. In Spoon Theory, every person has a finite number of spoons, but people with chronic illnesses have inherently less spoons than well people. So saying “I’m low on spoons today,” is sort of like saying “I’m tired,” except it’s more accurately: “Because of my illness, I am so tired that I cannot do all the things a healthy person can do.” Not having the spoons is like trying to run your iPhone with a battery that only carries half the charge.
Miserando, who has Lupus, coined Spoon Theory in 2003. Since then, it’s become common terminology and has its own Wikipedia entry. Some people with chronic illness or disability refer to themselves as “spoonies.” I have a spoon crossed with a pen tattooed on my hip. It illustrates the intersection of two major parts of my identity–writing and illness–in a way that looks like a battle flag. That’s because political protest and activism is also a big part of who I am, and I struggle to do it with limited spoons.
How do you throw a brick through the window of a bank if you can’t get out of bed?
This question–how do we protest when we are chronically ill?–is at the heart of Johanna Hedva’s Sick Woman Theory.
Johanna, who an autoimmune disorder, endometriosis, and mental illness, asks, “How do you throw a brick through the window of a bank if you can’t get out of bed?” The answer is: you can’t. In that case, Johanna argues that “most modes of political protest [for the chronically ill] are internalized, lived, embodied, suffering, and no doubt invisible.”
If that’s true, even existing as a sick person is a form of activism. It is not necessary to march in the streets. When health policy rules that you will not be given the allowances and care you need, survival itself is the protest.
When battling pain and fatigue in a world that doesn’t easily understand your limitations or provide for them, Johanna says that the most “anti-capitalist” thing people can do is care for themselves and others. To “take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community.”
She writes about hearing, but being unable to attend, the Black Lives Matters protests in Los Angeles in 2014. “I listened to the sounds of the marches as they drifted up to my window. Attached to the bed, I rose up my sick woman fist, in solidarity.”
Even existing as a sick person is a form of activism.
Reading this for the first time, I wondered; how could I lift my own fist in solidarity? Not just in response to Black Lives Matters, but other political movements happening around the world that affect minorities?
Unable to physically attend protests, my means of raising my voice is through writing publicly about issues that affect chronic illness communities such as health policy and social welfare. In New Zealand, we have a mostly public health system, not based on private insurance, so we’re not as easily affected by decisions around things like “pre-existing conditions” as currently being debated in the United States. But politics still decides which services and medications will be funded and therefore accessible. We also have one of the highest suicide rates in the world, driving calls for radical change to the mental health system.
Both these theories have given me language I can use to reach out, to better understand the chronic illness experience and explain it to others. It’s also given me a way to think about being an activist with low spoons.
Even if we are raising our fists from where we lay in bed, we can acknowledge each other’s ‘spoons’, and show others how to create and enact welcoming communities for vulnerable members of society whom policy will often affect the most. And we can remember that, for some of us, protest will be much more small and silent than we may like. It may be as simple as surviving. But that doesn’t mean that it cannot be seen.
Top photo by Pabak Sarkar used under Creative Commons license.