HHH column: Knowbody knows by Maaike Hommes

The HHH column is a monthly blog in which History, Health & Healing members share their thoughts: on research, current affairs, and anything to do with medical history. Each edition is written by another member – in due time, we hope to offer everybody a chance to publish a contribution here. This month, the floor is for Maaike Hommes, PhD candidate at the Graduate Centre for the Study of Culture of the Justus Liebig University in Giessen, Germany. Maaike allows us a glimpse into her research.

Maaike Hommes

Knowbody knows – Locating hysteria’s contested history in a present-day fibro-meme

A rectangular image, with text inscribed, the meme type. The shape of the grey surface faintly follows the form of a face. The colours alternate between light and dark in grey-blueish tones that mimic white skin color. In the bottom left corner, easy to miss, two darker stripes suggest a rounding, which creates the shape of a face. Seeing the assembly of colors, the missing mouth and eyes, the viewer knows they are not looking at a complete face or a real nose, but at a computer-generated image. Yet the words on the image refer to somebody’s pain, since the “I” referred to in the text at the bottom seems to be the entity that narrates. At one glance, the viewer is confusingly confronted with a nose, a non-existent face, and a narrator with fibromyalgia.

Fibromyalgia usually has nothing to do with noses. It is a chronic condition characterized by severe widespread pain, sleep disturbances and cognitive difficulties, often called ‘brain fog’ by patients. First classified in a 1990 study by the American College for Rheumatology, the illness remains contested at present. In her 2015 memoir on her life with fibromyalgia, Amy Berkowitz writes that as she reads more about the history of such unexplained illness, she is “surprised and amused to diagnose [herself] with hysteria”. Hysteria’s contested history, and its highly gendered view on unexplained illness, sticks to the way in which fibromyalgia is perceived today. It is the effect of concepts like hysteria on how unexplained illness is perceived, both by patients’ own experience of their bodily pain or discomfort, as within medical knowledge, that my research is centered on. Looking closely at this particular meme, I want to see how this history is mediated in the present.

While the meme might speak to some about the experience of dealing with an unknown condition, its reference might not come across to others. The measure of its referentiality is related to the unexplained nature of the illness. Fibromyalgia is often called an ‘invisible illness: it is not only invisible in the appearance of the patient – who often “looks fine” – but also to the medical gaze, which is extended to scans, x-rays and blood tests that show nothing, that says “everything looks normal”. The meme, by contrast, is all about visibility. It is a one-liner made visual, a text amplified, or recast in an image. This play between making the invisible visible works in other memes on fibromyalgia – fibro-memes, as they are called on patient fora. But in this one, it seems that something else is at stake. The visual reference is unclear, just as its cryptic text.

“Nobody Nose

My Pain (I have Fibromyalgia)”

Without the image, the first four words do something poetic. Accompanied by the image, the grammatical error seems to be implied and the viewer is left to wonder about the spelling, and about what it does to their understanding of the expressed pain. (Can one know pain differently? What is it to nose, instead of to know?) It is halfway through the second line that something happens. Here, the text leaves the play of words behind, and draws the viewer in, maybe unwantedly so. Here, the viewer becomes not only part of a pain they cannot know or nose, but of an “I” with an illness: a condition called fibromyalgia. This viewer might have heard of the illness, or they might have not. The name might be strange to them, excluding them ever more from the scene in which they suddenly feel misplaced. In this case, it is the name, connected to the ”I” that excludes them, that removed them from the grammatical play and the image of the nose.

Another viewer might know very well of the illness. This might be exactly why they look at the image, as they have the same pain, and look for support. They have known for a long time that nobody nose it. They might shrug, or might even think this meme is funny. For this viewer, the brackets do not exclude. They know what fibromyalgia is, and feel included by the use of the “I” to recognize another patient. In the best case, the meme might offer a moment of comfort, something lighthearted. The mere recognizability of a pain that is shared is enough for this meme to work.

The difference between these two viewers can be described by the grammatical error used by the image: the difference between what it is to nose and to know. Where some viewers might know the difficulty of having to live with an unexplained pain, the image tells them they do not nose it. It calls for a more embodied empathy, one that is not only known, but nosed, as a different way of describing a felt, experienced and embodied pain beyond medical explicability, blood tests and physical markers. Attention to the way in which fibromyalgia is nosed removes the present-day condition from its link to hysteria’s contested history. It is an attempt to formulate a language beyond the medical gaze alone, beyond hysteria’s sticky history, and beyond that which present-day medical science leaves behind as merely unexplained.