“Go home and eat some ice cream … you might as well.”
This advice was given by a doctor who cared for me during a phase of the “standard of care” protocol. This statement reflects a familiar theme for those of us with serious illness, specifically, a haphazard, anything goes attitude toward self care. There are at least two reasons for this: first, most physicians are trained within the rigid medical school curriculum that is shaped by the ‘biomedical model.’ Do not be intimidated by the phrase: biomedical. What it refers to is the Western tradition of medicine especially over the past couple hundred years, beginning with the germ theory of disease, then the discovery of the structure of DNA, and now dominated by genomic sequencing. The guiding thesis is that biomarkers and lab work reveal all, or at least most, of what clinicians need to know to diagnose and treat diseases. In other words, there is not much to do ‘personally’ beyond what the treatment protocols call for clinically.
The role of nutrition in cancer care is unknown, other than burgeoning evidence linking fiber intake to improved outcomes following the diagnosis of colorectal cancer, and studies attempting to correlate consumption of red meat and processed foods to cancer risk. There is not (yet) a decisive trial arguing for any therapeutic efficacy or improved clinical outcome tied to diet.
Second, following the deterministic ideal from biomedecine, that diseases are governed by microscopic physical laws, and that what matters to care is what happens in the clinic, health outcomes and prognosis follow a disease trajectory that is well established through population-wide statistics. Because the outcomes for my serious illness are grim and options for curative therapies are limited, the take on self-care is “anything goes.” Go eat some ice cream. You might as well.
This post is not about ice cream. Rather, this post is about the attitude. Anything goes.
The problem with this attitude is that if anything goes—if everything is permissible—then nothing matters. If nothing matters, it is easy to become disenfranchised. If nothing matters, we lose grip on our “agency,” or feelings of control. When feeling out of control, our mental health suffers. We believe things like “you might as well.”
The anything goes attitude is especially damaging when we peer through the lens of nutrition: choosing what to eat, when to eat is an exercise in self control. Amidst the uncertainty of serious illness, when threats to our agency loom large, patients may express their control through diet. In the absence of clinical data to argue for (or against) nutritional solutions for cancer, clinicians are often silent. Meanwhile patients ask their peers what diet others are following. No doubt patients are interested in enhancing and extending their lives and so are interested in the potential outcomes associated with diet, but more so, I think patients are desperate to compare their experiences, share what decisions each other is making on their own, and validate their choices through peer support. The anything goes mindset undermines what patients seek: agency, control, and support. When these pillars are chipped away, our health suffers.
You might as well eat what you want.
You might as well have a few drinks.
You might as well charge that to credit; take shortcuts on the job; skip the difficult conversation; give up on that goal you set for yourself; stop going to the gym; do not fix the strained relationship with your family; just do what you want. You might as well.
When diagnosed with a serious illness it is very, very easy to slip into the anything goes mode. When we are in the middle of it, recovering from surgery, nauseated by chemo, weak from fatigue, in short, when we are in the shit, it is easy to believe that we *deserve* to treat ourselves. That our compensation for getting blindsided by a life-limiting or chronic illness is to eat the ice cream.
I agree that serious illness carries a privilege. Yes. A privilege. And I think further that serious illness does license an attitude to seek more enjoyment in the good moments and savor our time with family and friends. Even to, sure, go home and eat some ice cream, but not because anything goes; instead, because well being is possible within serious illness, and that is something we discover for ourselves by living life, not through microscopes or biomarkers—not that these are not integral tools to practice medicine—but because health and illness are bigger than medicine.
We are privileged to confront mortality in a robust and meaningful way; in a way that opens new vistas; in a way that we might serve as a beacon to others to live a life seeking wellbeing. We are privileged to learn the intimate secrets of life. So tell your story. Enjoy living. You might as well.
This post originally appeared on Glioblastology on June 20, 2019. It is republished with permission.