Illness as Metaphor

and why I will never "lose my battle"

Hi friends–

It’s been a little while since I’ve written. With chemo and then friends in town for Mardi Gras, I have been a bit busier than usual. I’ve also ramped up on the integrative services offered at the cancer center, so I’ve been doing acupuncture and one-on-one therapeutic yoga (both fully covered by insurance) once a week. Both have been lovely and healing and a great excuse for me to get out of the house regularly – really a perk of having cancer, I’d say! 

As a quick update: I have completed the third of six rounds of chemo. We’ll repeat a CT scan after the next round of chemo to assess how well my cancer has responded to the treatment, where we’re hoping for no evidence of disease (NED). Achieving NED after first-line treatment is associated with a better prognosis and longer survival, so that’s really what you want to see. With that said, whether or not I achieve NED, I’ll still finish the full six rounds of chemo and then shift to receiving only immune-targeted treatment using Herceptin and Perjeta. The hope is that those two drugs will keep working (i.e., keep my cancer in remission or stable) for a long long time, so that I don’t have to move onto a second-line treatment any time soon. In stage IV cancer land, the faster you run out of viable treatment options, the faster you die. 

Speaking of death, today I was inspired by this NPR article, “Why 'lost their battle' with serious illness is the wrong thing to say,” to share some of my thoughts on the battle metaphor so often used to describe terminal illness, and especially cancer. It’s understandable that we crave metaphor and euphemism for discussing illness and death, but the use and choice of metaphor has impacts on people living with illness. 

Susan Sontag, our Cancer Queen – may she rest in power – explores this at length in Illness as Metaphor. She writes about the evolution of metaphors commonly used in literature and pop culture to describe and explain tuberculosis and cancer, and then later HIV/AIDS. She makes the case that the metaphors commonly used to explain cancer evolved from metaphors of punishment (i.e., divine wrath in ancient literature) to metaphors of personal and emotional failing in the 19th century. 

Or course, the latter persists today. It’s why we’re quick to caveat a diagnosis of lung cancer with “And, she didn’t even smoke!” as if a non-smoker with lung cancer is somehow more deserving of sympathy than a smoker with lung cancer. Sontag argues that this “preposterous and dangerous” association between illness and personal failing (i.e., work too much, indulge too much, bottle up too much emotion and stress) tends to put “the onus of the disease on the patient and not only weakens the patient’s ability to understand the range of plausible medical treatment but also, implicitly, directs the patient away from such treatment.” 

Sick people are inundated with the implication that they are somehow at fault for their own illness, and this undoubtedly contributes to the vulnerability of this population to the insidiousness of quackery (i.e., foregoing chemotherapy for a five week juice cleanse, et cetera et cetera). I’m not suggesting that lifestyle changes aren’t beneficial, but the reality is that there is a cruel randomness to illness, especially cancer, and the shame and guilt caused by the metaphor of personal failing certainly outweighs any positive behavior changes it may elicit.  

Today, the most commonly used metaphor for cancer is, as referenced in the NPR article, the metaphor of battle. A cancer patient is a “fighter” who either “survives” or “loses her battle.” I believe that the use of this metaphor is designed to honor the patient and what they have experienced. However, this metaphor is not that far from the metaphor of personal failing. It suggests that if I die of this disease, I have somehow not fought hard enough; I have “lost.” Sontag’s central argument is that “illness is not metaphor, and that the most truthful way of regarding illness – and the healthiest way of being ill – is to resist such metaphorical thinking.” The reality is that people die of cancer not because they haven’t fought hard enough but because they get unlucky – their cancer happens to come back, their cancer simply doesn’t respond well to available treatment options, science just hasn’t figured it all out yet. 

The moral of this very long story is that if I die of my disease – which I very likely eventually will – and you say that I “lost my battle,” I will find a way to come back and haunt you :) 

With endless love,

Taylor

p.s. A cancer influencer (love that this exists) that I follow makes the joke that if she dies of cancer, at worst it will be a “tie,” since the cancer cells will die with her. If I die, you are allowed to say that I “tied my cancer in a battle to the death.”