Questions about The Body

Or, Why is this happening to me?

“Illness is the experience of living through the disease. If disease talk measures the body, illness talk tells of the fear and frustration of being inside a body that is breaking down. Illness begins where medicine leaves off, where I recognize that what is happening to my body is not some set of measures. What happens to my body happens to my life. My life consists of temperature and circulation, but also of hopes and disappointments, joys and sorrows, none of which can be measured. In illness talk there is no such thing as the body, only my body as I experience it. Disease talk charts the progression of certain measures. Illness talk is a story about moving from a perfectly comfortable body to one that forces me to ask: What’s happening to me? Not it, but me.

Medical treatment, whether in an office or hospital or on the phone, is designed to make everyone believe that only the disease - what is measurable and mechanical - can be discussed. Talking to doctors always make me conscious of what I am not supposed to say. Thus I am particularly silent when I have been given bad news. I know I am supposed to ask only about the disease, but what I feel is the illness. The questions I want to ask about my life are not allowed, not speakable, not even thinkable. The gap between what I feel and what I feel allowed to say widens and deepens and swallows my voice.”

So writes Arthur Frank in At The Will of the Body.

I heard a clinician on a podcast say that, when delivering bad news to a patient, they refer to “the body.” So they’ll say, “The kidneys aren’t working … the heart isn’t pumping right … the body is getting weaker.” This allows them to situate “the body” in the realm of the scientific for the patient, to do exactly what Frank describes. It can be comforting to speak to someone who knows how to fly the plane of your life as smoke is pouring from the engines. I think also such language creates a comforting split in one’s identity: this isn’t happening to me, it’s happening to my body.

Frank picks up on one pitfall of this split: the silencing of illness. So much time is spent talking about blood pressure, creatinine, and other measurable biological phenomena, that no space is left over for the story of illness. The body has filled the room and there is no space for the person.

The other pitfall, which Frank alludes to here and elsewhere, is that by speaking this way, clinicians can exacerbate the alienation people have from their own embodiment. When we’re healthy, we dwell and move through the world with ease. Our bodies are companions in our journey through life. When I sit, I sit comfortably. When I lift, I lift with ease. When I think, I think clearly. Even at the first stroke of an acute illness, the body isn’t severed from who I am. Rather, I ask, “Why did this happen to me? What is going to happen to me?” Impending death for my body is death for me. I and my body are one.

Once the acuity has faded, though, and one has to get on with living (even in the face of death), chronicity splits the body from identity. Now the body becomes an obstacle to one’s will. I can’t sit comfortably, or at all. I can lift easily, or at all. I can’t think clearly, or at all. I have all sorts of ideas, hopes, and plans, but my body now stands in the way of them.

Some people wish to overcome the body through enhancement. Others transcend the body through religion and spirituality. But neither honor the body for what it has done, even in its limitation. This is how we’re here, now: through our bodies. There is no other way of experiencing life today. The path forward isn’t to complete the rift between identity and body (making good on the promise of death), but to try to find some measure of wholeness even when it’s hard. What does it mean to pursue health, in whatever little bit of it you have, right now? Why do you have this small measure of health?

We need not drag “the body” further under the microscope. Instead, we can walk with this person (who has a body) further down the path of their illness - which is really the path of their life now. As clinicians, this is a profound invitation. We’ll try to help with our plastic, chemicals, scalpels, and other bits of technology, but in service to this person, not merely “this body.”

How do we subtly distance someone from health through our language?

How can we speak to bring healing - restoring wholeness - to someone who feels at odds with their body?