“So, for the person in pain, so incontestably and unnegotiably present is it that ‘having pain’ may come to be thought of as the most vibrant example of what it is to ‘have certainty,’ while for the other person it is so elusive that ‘hearing about pain’ may exist as the primary model of what it is to ‘have doubt.’ Thus pain comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed. Whatever pain achieves, it achieves in part through its resistance to language.” – Elaine Scarry, The Body in Pain.

There are no words for pain because pain itself is a form of communication, the body trying to tell the self/consciousness something urgent. It can’t be communicated because it already is communication but in the words and grammar of the body, which can’t be translated or maybe we have forgotten how. Now we seek out experts to translate our pain to us. Experts use blood tests and other ways of looking to tell us what our bodies are telling us. When they can tell us. When they can tell us, it is usually a story called something like IBS or Multiple sclerosis. These stories are well-known and rational. They have treatments if not cures. These stories are supposed to have endings, happy endings. But the body keeps telling us and nothing will shut it up. Sometimes it tells us to death.

What I know from my own pain is that this story we have been telling ourselves about our bodies and how they work, how they don’t work, is not true. If you’ve read Foucault you know that medicine is a way of looking at and understanding and controlling bodies. Medicine makes its own knowledge or stories about how bodies work, how they don’t work, and how to make them work again. These stories are usually very linear, very straightforward, rational: something happened to you/you did something >body is damaged > diagnose cause of damage > treat disease/damage with some chemical, surgery, or treatment > cure.

The thing I’ve discovered since finding out I have an endocrine disease, is that the body doesn’t work at all the way we’re told it does. That story in which cells and organs tell other organs what to do and when (like little individuals making rational choices) is a great fiction. These systems (glands in the endocrine system, the brain, etc.) are all entangled in feedback loops. The thalamus does its thing, making the proteins, hormones, enzymes and other chemicals it makes with what’s available. Those chemicals are then taken up by other glands that make their own things. If there’s too much of one thing, the other gland will make more of whatever it makes because it has more stuff to make it with. No cell or gland is sitting in the body sending out orders to other glands to make more or less. There is no hierarchy. There are just entangled systems interacting. An ecosystem – many entangled ecosystems. We can affect these ecosystems indirectly by putting different things in our bodies (food, supplements, drugs, exercise), but when you’re dealing with entangled systems, there is no straightforward way to fix anything. But this is still a story that begins and ends in the world of medicine when so much of what I know now about the story our bodies tell us through pain and chronic disease extends far beyond the body into food, culture, environment, politics, work. The body and its pain, don’t end and begin at the skin. There is no boundary for the body.