The first time I came face to face with the metaphor of illness in a tangible form was on a weekend trip to Santa Monica Beach. I was on summer break after my Freshman year at UCLA, sprawled out in the California sun with a second-hand copy of Siddhartha Mukherjee’s The Emperor of All Maladies. I flipped open the first page to: “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” The quote comes from Illness as a Metaphor by Susan Sontag, a work I had never heard of at the time. Reading it then made me shiver. So many feelings I had never been able to put into words suddenly made sense.
By the time I stumbled across those words, I had lived with a diagnosis of ulcerative colitis for six years. Through all that time, I struggled to describe what was happening to me. The people around me, my family and friends, had never been seriously ill. Never experienced anything like what I was going through. My experiences felt so foreign, it was as if I had spent the last six years on the moon.
Because I couldn’t find the words myself, the rest of the world filled them in for me. One of the first ways I remember my condition being described to me was as my immune system “attacking” my intestines. Words like “fight” and “battle” are ubiquitous in the way we describe illness. But this always felt off to me. If I follow the logic of this metaphor, I was fighting against an illness caused by my immune system, a part of me, which was attacking my own organs. The implication that I was somehow the cause of my illness did not escape me, even as a teenager. I felt a lot of shame about my illness for a variety of reasons: my frustrations with frequent absences from school, my fatigue, and chronic pain stopping me from doing many of the activities I loved, and changes to the way I was viewed by those around me. But when I came across Sontag’s words, how I looked back on those years and myself began to change.
Metaphors are more than literary devices, but ways to characterize the indescribable sticky, abstract feelings at the core of the human experience. Experiences such as illness. In Illness as a Metaphor, Sontag details how, historically, illness was viewed as a punishment for wrongdoing and an expression of someone’s innate characteristics. Sontag describes how archetypes of illnesses such as TB were constructed in literature: “Ideals of vitality and perfect spontaneity was thought to make someone an ideal candidate for TB” (1). She then contrasts this with the attributes assigned to a person with cancer in modern society: someone who represses their emotions and has failed to be expressive in their feelings and desires (1). The construction of this metaphor does not just attribute characteristics to those who are ill but places the responsibility for being ill on the person themselves. Sontag writes: “With the modern diseases (once TB and now cancer), the romantic idea that the disease expresses the character is invariably extended to assert that the character causes the disease” (1). Today, we know that TB is caused by the bacteria Mycobacteria tuberculosis, and being infected has nothing to do with one’s “vitality”, but we still use metaphors to talk about diseases and those affected by them.
The predominant metaphor we have used to describe illness over the last few hundred years is the martial metaphor. In his book The Language of Medicine, Dr. Abraham Fuks traces the emergence of the martial metaphor of illness to Pasteur’s germ theory in the nineteenth century. Germ theory postulated that microorganisms such as bacteria, viruses, and fungi, were responsible for causing many disease states instead of odors or miasma (2). The marital metaphor for illness positions these microorganisms as “invaders” and the immune system as our body’s military that must eradicate this foreign threat with treatments such as antibiotics as weapons at our disposal (2).
This metaphor has been broadened to include other illnesses, such as cancer and autoimmune conditions, but this time the body’s own mutant cells or dysregulated immune system are the invaders. This martial metaphor is also used to justify aggressive treatments like chemotherapy, to “fight” the body’s assault against itself. This even extends to scientific research, which is often described as the “fight” against disease. It is so normalized to describe illness in terms of war that we do not even do it consciously. Statements like “the immune system attacks a virus” or someone “battling cancer” are so embedded in our language that we do not even realize we are speaking metaphorically. However, there is nothing inherently naturalistic about describing illness in militaristic terms.
Much of the intent behind using phrases like “winning the battle” is to transfer agency back to the patient and uplift them. But when we describe illness as a battle, what stories are we telling about those who don’t win? I have a disease that has no cure, that I would have to live with for the rest of my life. Within this construct of the metaphor, there was never any way for me to “win.” People have chronic illnesses like autoimmune diseases mostly due to factors beyond their control. Similarly, the prognosis is often equally out of their control. It can be uncomfortable to confront the fact that the line between the kingdom of the well and of the sick is so blurred, and where we reside relative to it is mostly due to random chance and not some innate characteristic within ourselves. That at any moment we could be forced to use our “other passport”. But illness, disability, and death are inherent parts of the human experience and there are other ways of constructing narratives surrounding these experiences that nurture a better path to healing.
Many people who live with a chronic illness have heard from someone in their life: “Maybe if you just tried a little harder you would feel better.” There is significant stigma associated with chronic illness, but perhaps we can begin to deconstruct this through the stories we tell about illness through metaphor. The military metaphor for illness resides strongly within the medical model of disability, depicting disease as residing within a person’s own body and as something that needs to be fixed or cured. But there is so much more to the experiences of illness than just what is going on in your body. Instead, illness metaphors can be formed through the lens of other models like the social and cultural models of disability which have repainted disability as a part of the diversity of human experience and established communities that have their own language, norms, and culture.
To do this requires harnessing the power of metaphor to influence how we understand the world and interact with our own experiences. Anita Wholmann in Metaphor in Illness Writing describes how narrative and metaphor can give meaning to traumatic experiences that may seem devoid of meaning. She discusses how this power of metaphor can be harnessed through “recycling” the metaphor, when the original has become derivative or cliche (3). Perhaps illness metaphor can be similarly repurposed or rewritten entirely to embrace the cultural aspects of disability and chronic illness.
An example of how this can be done is “Spoon theory” proposed by disability advocate Christine Miserandino to explain her experience of living with Lupus to a friend. Instead of using words, Miserandino hands her friend a “bouquet of spoons” and tells her to think about the tasks she would normally complete in a day (4). Then she tells her that now each task would cost her a spoon to complete. Spoon theory is a metaphor that encapsulates the experiences of fatigue and rationing of energy those affected by chronic illness know only too well and presents them in a digestible format to someone who has never experienced this.
This is how I’ve rewritten my story for myself. Spoon theory in particular has been important to me personally in how my view of my illness and myself has shifted. Now when there’s a day I’m particularly not feeling well, I can tell the people in my life, my professors, my employer, my friends, my family not that I have lost the battle but that I just don’t have enough spoons for today. But tomorrow I may have more spoons yet to give. Using metaphors like these to communicate the experiences of chronic illness and disability to able-bodied people. This allows for a better understanding of our community and serves to destigmatize the more stigmatizing aspects of chronic illness such as fatigue, rewriting our stories both for ourselves and those around us in the words we choose. These were the words (or spoons) I needed when I was 14.
Citations
- Sontag, Susan (1978). Illness as a Metaphor
- Fuks, A. (2021). The language of medicine. Oxford University Press.
- Wohlmann, A. (2022). Metaphor in illness writing: Fight and battle reused. Edinburgh University Press.
- Miserandino, C. (2003). The Spoon Theory [web log]. Retrieved March 3, 2023, from https://butudontlooksick.com/.