Admittedly, there’s not much to see on a country road 100 miles southwest of Iowa City, Iowa. It’s especially true in winter, when a blanket of white snow obscures any and all features of the seemingly endless fields of corn and soy. In the radiance of fresh snow on a bright winter day, even the rolling hills seem to mesh into one another. Yet this monotony is punctuated by the presence of signs. Some signs are advertisements. Some signs are political. Some signs are religious. Some signs are in English, others in Spanish or German, or even Swedish. But all are interesting because they provide an insight into the lives of the people that I am privileged to take care of.
Perhaps the most interesting sign I’ve seen in a very long time is a simple white sign with red font. It says: Fuel Your Hunger.
I passed the exit, but about a few miles down the road, I still felt this thought gnawing at me. I still had a good half-hour left on my journey to a rural clinic and the road was clear, without any other distractions. The radio signal had started to become staticky and my phone was running low on batteries. So here I was in the middle of Iowa, alone with my thoughts, zooming down a country road and rheuminating over this quizzical sign.
Hungry for What?
The first, and simplest, explanation was that the person who wrote that sign simply didn’t know the meaning of the words. But what a terrible and condescending explanation that would be. Contrary to the harmful stereotypes that we often see on television and movies, rural folk know exactly who they are and what they want. They are also acutely aware of the condescension that people in other parts of the country direct toward them, and they—rightfully—deeply resent this form of prejudice.
As a transplant to Iowa and the Midwest in general, I’m very mindful of this dynamic, so I took “fuel your hunger” at face value. It wasn’t a mistake; it was a genuine insight.
As I continued to think about the sign, I began to focus on the word hunger and all of its connotations. I am privileged to spend most of my life knowing hunger as an abstraction. Personally, I use it mostly to describe an abstract concept, as in hungry for knowledge or power hungry. Sometimes I use it in a medicalized fashion, like hungry bone disease or air hunger. My young kids use the term more literally, but to them it’s rather selective too: “Daddy, I’m hungry for apples,” or “I don’t want to eat. I’m. Not. Hungry.”
But many of my patients—the people in this community—likely do not see it from such a lens. For many of them, hunger is not just an abstraction or a nuisance. Hunger is a way of life, which is tragically ironic given that people in these communities often lack the funds to buy the food they themselves grow.
That’s when I gained an insight into what hunger may mean in that context. Hunger is the empty tank. Even though I conceptualized hunger as the presence of an unpleasant feeling, it may be more than just that. Hunger may be defined as the absence of something. In other words, if being hungry is seen as having an “empty tank,” then the emphasis can be more on the “empty” than on the “tank.” And when you engage in a frame shift to look at the world from that perspective, you start to see that “fuel your hunger” makes perfect sense.
Boost Your Immunity
Hunger isn’t the only word in which such a disconnect occurs. As I was reading a children’s book later that week, I saw a similar dynamic with the phrase “coming through the door.” I suppose it is pedantic but coming through the doorway is the technically correct way of saying this because the door itself is solid and impassable. But, by far, the most common situation in which I’ve started to see this dilemma is in the clinic, when patients ask what they can do to “boost immunity.”
I can see why: I too get bombarded by internet ads for supplements for immune boosters even though I have no search history, as far as I can tell, for such products. For people who are searching for information, I can imagine that exposure is even greater. After all, the patients who ask for such a boost are the ones who are being treated with immune suppressants. As a result, they are told that their immune systems do not work and that they are at risk for infections. They may even search for answers online to maintain their immune systems, leading to an even deeper immersion into the belief that their immune system needs to be boosted.
My patients are often disappointed to learn that no such immune-boosting product really exists, at least as far as has been properly studied and rigorously evaluated. The immune system is so complex and multifaceted that there is no way to boost it as a whole. Instead, there may be ways to support the function of one or more of its many arms. Yet this is not a satisfactory answer, neither to me nor to my patients. After I meditated considerably about “fueling hunger,” I started to think about an answer that brings greater satisfaction.
In truth, the immune boosters that we seek are the ones that aren’t as well marketed. In the age of the pandemic, we’ve learned that masks and vaccinations are indeed immune boosters, helping reduce the severity of disease and risk of death.1,2 More subtly, lifestyle interventions, such as a more nutritious diet and regular exercise, can help prevent infections and curb elements of disease activity, and so, may be thought of as immune boosters.3 Even regular brushing and flossing can prevent a host of infections in the mouth—and possibly immune dysfunction beyond—making those habits immune boosters in their own right.4 The list can go on, from regular skin moisturization to greater time outdoors and maybe even mindfulness activities.
More obliquely, I’ve started to mention that the immunosuppressants themselves are also immune boosters. Although the terminology continues to evolve, autoimmune disease does predispose to further immune dysfunction and recurrent infections. When we help modulate inappropriate responses, we’re supporting the immune system in gaining a new balance in which immunity can more effectively work against germs and other threats. Prescription of these medications also helps patients regain the quality of life necessary for them to use other immune-boosting techniques, such as a more varied diet and consistent exercise.
Fuel Your Hunger to Learn About Patients
There’s another lesson that I’ve taken away from my snowy day observation. Frameworks for how we look at the world don’t just come out of nowhere. They are based on lived experiences and unique socioeconomic circumstances. A patient and I can have a meaningful discussion during an encounter, but in the larger scheme of things, this may be worthless once we leave the clinic and reenter our own worlds. In the clinic, we can talk about diet and exercise as immune boosters but that conversation won’t carry far when access to such immune boosters is so severely limited in many parts of our nation.
That’s why we have to critically listen to patients and reappraise our approaches time and time again. It’s important to know about the immune system and be regarded as experts in musculoskeletal medicine, but if we are not cognizant of the patient’s world, this knowledge is ultimately in vain. If we don’t join hands with our patients and express as much interest in knowing the intricacies of their world as they are interested in learning about ours, we’ll never be able to meaningfully engage in service. It’s certainly not a novel thought. A 19th century aphorism commonly attributed to William Osler goes along the lines of, “It is more important to know what sort of a patient has the disease than what sort of a disease the patient has.”5 But two centuries onward, the gap between individuals, including patients and their healthcare team members, remains large. In many ways, it feels like it’s getting harder and harder to understand patients’ experiences because we are living in more isolated worlds.
Compounding this is the modern trend toward shorter clinic visits, with lower reimbursement for healthcare team members. We’re evaluated, assessed and judged for certain metrics and benchmarks that simply don’t prioritize this mutual understanding. At best, we’re coached into using tricks to improve patient satisfaction scores, but not really connection and engagement. This attitude is even more dangerous when we interface with members of vulnerable populations for whom a thorough understanding of their lives is even more vital.6
We’re All Hungry
Even as a tremendous optimist, I see little hope in the near future to reconcile the big gaps that exist between patients and their healthcare team members. We need to be paid to understand what fueling one’s hunger and boosting one’s immunity mean, more than to dispense medications and write notes. We need champions who look at what we do as not only a transaction for customers but as a public good for our society as a whole. And we need greater grace to ensure that we can persevere in spite of such challenges.
I do see reasons for hope in the longer run. At larger levels, patient advocacy organizations are helping us understand the global elements of patient experience. Social media has provided glimpses into the lived experiences of patients in ways that would have been much more difficult in the past. The stigma of chronic illness is slowly being shed, allowing for more meaningful conversations in the clinic. And journals are much more amenable to publishing research that prioritizes an understanding of the lived experiences of patients. Just as vital is the success of advocacy groups, including the ACR, in interfacing with government at the federal, state and local levels so that value can be retained in clinic encounters.
Most importantly, I see great hope in the medical students, resident physicians and fellow physicians with whom I interact. They have an innate awareness of socioeconomic determinants of health and are more attuned to the challenges of communication and customization than their predecessors, including me. I see them volunteering in the community and engaging with the wider world to understand these mental frameworks and reconcile them with evidence-based medicine. I’m truly inspired by their leadership and hope the system doesn’t dull their enthusiasm as they continue on their career trajectories.
Stay Hungry
Since I first passed the billboard, I’ve had a chance to return to that area. I even took a snapshot of the sign to post on my office wall. While I cannot honestly say that I’m a completely changed person, I can say that I’m a little bit humbler. It’s time to revisit assumptions and preconceptions about our patients’ lives.
I’m spending more time talking with patients, not just about their medical issues, but about how their diseases affect the way they look at the world and how their world affects how they look at their diseases. I’m challenging myself to be more precise with words because they are so laden with meanings (like “boost”). I’m reflecting empathically more often and more transparently with patients. And I’m looking at the world more critically to see how I fit.
In other words, I’m doing what the billboard suggests: I’m fueling my hunger.
Bharat Kumar, MD, MME, FACP, FAAAAI, RhMSUS, is the associate program director of the rheumatology fellowship training program at the University of Iowa, Iowa City, and the physician editor of The Rheumatologist. Follow him on Twitter @BharatKumarMD.
References
- Tjaden AH, Edelstein SL, Ahmed N, Calamari L, et al. Association between COVID-19 and consistent mask wearing during contact with others outside the household-A nested case-control analysis, November 2020-October 2021. Influenza Other Respir Viruses. 2023 Jan 5. doi: 10.1111/irv.13080. Epub ahead of print.
- Peebles K, Arciuolo RJ, Romano AS, et al. Pfizer-BioNTech COVID-19 vaccine effectiveness against SARS-CoV-2 infection among long-term care facility staff with and without prior infection in New York City, January–June 2021. J Infect Dis. 2023 Jan 10:jiac448. doi: 10.1093/infdis/jiac448. Epub ahead of print.
- Blaess J, Goepfert T, Geneton S, et al. Benefits & risks of physical activity in patients with systemic lupus erythematosus: A systematic review of the literature. Semin Arthritis Rheum. 2022 Nov 19;58:152128. doi: 10.1016/j.semarthrit.2022.152128. Epub ahead of print.
- Radwan-Oczko M, Duś-Ilnicka I, Richards P, et al. Evaluation of oral health status and oral care of patients with rheumatoid arthritis. Int J Dent. 2020 Oct 30;2020:8896766. doi: 10.1155/2020/8896766.
- O’Toole G. It is quite as important to know what kind of a patient the disease has got as to know what kind of a disease the patient has got. Quote Investigator. 2019 Jul 20. https://quoteinvestigator.com/2019/07/20/patient.
- Chauhan A, Walton M, Manias E, et al. The safety of health care for ethnic minority patients: a systematic review. Int J Equity Health. 2020 Jul 8;19(1):118.
