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Talking About Mental Illness in Long-Term Care: "The Diabetic in Room 204"
Our use of the word “disease” is as much a social construct as it is a biological event—a concept put forth by Fleischman nearly two decades ago.1 The notion of disease as a social construct becomes more apparent when we speak of chronic conditions. This is because when the lives of older adults become burdened with a chronic illness, how we come to know and interact with them as a person changes over time as the illness manifests.
Fundamentally, what we risk in this social construction of disease is stigma and labeling; our tendency to simplify complex health issues results in a loss of the “human” aspect of medicine. In our previous discussions, we have come to realize how stigma and labelling act as barriers to adequate care, because they skew our perception of the health of vulnerable populations.1-4
Unlike previous iterations of these commentaries, however, the focus here is not a lexicological understanding of physical and mental illness (ie, choice of wording) but rather a syntactical one. In particular, we will explore in this discussion the critical difference between having an illness and being defined by an illness. In other words, understanding the extent to which a person who develops dementia is “demented,” or a person who lives with a disability is “disabled,” and how a clear separation between these two connotations becomes critical in completing the picture of the stigma of mental illness.
This may be a delicate task, as it requires a re-examination of the English language to an audience for whom this is their native tongue. Nevertheless, I hope it will become clear that such a re-examination is necessary and appropriate.
Descriptors of Disease
First, we must begin with a prelude regarding grammar. The sentence structure of the English language requires that an adjective often precedes a noun. For our purposes, the adjective would be a description of the disease state (eg, “delirious”), and the noun would be the subject of this description (eg, the patient).
Since early on in the language acquisition process, the brain has become hardwired to understand that an utterance such as “the sky blue” is simply incorrect. For speakers of French, Italian, Spanish, and other Latin-derived languages, a translation of this phrase would be correct, as the syntax of these languages posits that the adjective often follows (rather than precedes) the noun. In English, we are confined with “the blue sky.” Unfortunately, this sentence structure risks the subject being principally defined by the descriptor—with the noun sometimes dropped altogether—creating unintended misimpressions.
The following are examples of commonly heard dialogue regarding older adults, with emphasis added to highlight the unfavorable syntax:
“This meal is for Mr Kline, the diabetic in room 204.”
“Mary is having a hard time coping with the loss of her husband, and the fact that she already is depressed and anxious isn’t helping.”
“When I entered the room, I found him delirious and confused. I think the dementia is worsening.”
“Our agency provides services to physically disabled seniors.”
Changing Perceptions
Almost 20 years ago, Fleischman1 described three modalities of disease self-identification: “I am,” “I have,” and “I suffer from.” The existential statement—“I am” —incorporates the disease as part of the self. The possessive construction—“I have”—distances the disease from the individual, casting it as an external object that the sufferer “possesses.” Finally, the phrase “I suffer from” portrays the affected individual as what Fleishman refers to as “an experiencer of a state of somatic or psychological dysfunction.”1
These three expressions can be viewed as providing different levels of “separation” between the patient and the disease, which is ideal in order to avoid stigmatizing the patient. To that end, I often find myself employing the phrase “to live with,” which promotes the idea that the patient is employing the necessary coping mechanisms in order to lessen the burden of this disease on their life. Simply put, the disease does not define them.
As we age, the likelihood of developing chronic conditions increases. Due to the social construction of an illness, if an individual has been living with a condition (eg, diabetes, hypertension, dementia, depression, etc) for a number of years or decades, the illness becomes a part of their identity in the eyes of others. Thus, when we refer to them by their disease (eg, “the diabetic patient”), we are unknowingly equating them with their burden. From my experience, we see this usage most predominantly in the presence of cognitive decline. These illnesses—grouped under the umbrella term of “dementia”—alter an older adult’s behaviors and dispositions and can serve to divide someone’s life into “before” and “after” the onset of the disease. For this reason, MacRae5 refers to being diagnosed with Alzheimer’s disease as a “critical incident that threatens identity.”
On the other hand, with expressions such as “to suffer from” or “to live with” at our disposal, our perception of the individual immediately shifts to one which acknowledges the impact of the disease on their life. However, and arguably more importantly, an older adult who is viewed in this context sees themselves as a distinct person who has not had their identity stolen because of a burdensome, chronic illness and can continue to live using self-management coping strategies. Observe the remodeled examples, and notice the alteration in syntax that the emphasis on the “person” rather than the “disease” provides:
“This meal is for Mr. Kline, our patient with diabetes in room 204.”
“Mary is having a hard time coping with the loss of her husband, considering she is also living with depression and anxiety.”
“When I entered the room, I found him in a state of delirium and confusion. I think his cognitive function may be declining.”
“Our agency provides services to seniors with varying physical abilities.”
Moving Forward
No doubt the use of adjective-noun language has become subtly ingrained in our day-to-day speech. That is, we may describe an older adult—whether they be a patient or a loved one—as “diabetic” or “delirious” without intended malice, as the use of these adjectives, syntactically speaking, is perfectly acceptable. However, the point I have sought to emphasize here is that these words carry an exceptional burden in the context of health care, especially given that the older adult population is a vulnerable one. As care providers, we become their voice, giving us tremendous responsibility to speak in a manner as they themselves would wish to be viewed. Furthermore, the actions of those in health care influence incoming generations of care providers, particularly in regards to sensitive issues; Link and Phelan6 found that individuals develop conceptions and expectations of mental illness early in life as part of routine socialization. The remodeled above examples are specific to older adults, but these strategies are applicable to all patient populations.
I firmly believe that, on the part of those who do not live with these conditions, the minimal effort taken to rephrase our words in a more compassionate manner results in tremendous appreciation by those for whom we provide care. Time and time again, I have witnessed positive responses by older adults who appreciate not being defined by their illness. They are not “ill persons” but rather persons living with illnesses, and we should treat them accordingly.
1. Fleischman S. I am… , I have… , I suffer from… : A linguist reflects on the language of illness and disease. J Med Human. 1999;20(1):3-32.
2. Sarkisian CA, Lee-Henderson MH, Mangione CM. Do depressed older adults who attribute depression to “old age” believe it is important to seek care? J Gen Intern Med. 2003;18(12):1001-1005.
3. Angermeyer MC, Dietrich S. Public beliefs about and attitudes towards people with mental illness: a review of population studies. Acta Psychiatr Scand. 2006;113(3):163-179.
4. Blay SL, Toledo Pisa Peluso E. Public stigma: the community’s tolerance of Alzheimer disease. Am J Geriatr Psychiatry. 2010;18(2):163-171.
5. MacRae H. Managing identity while living with Alzheimer’s disease. Qual Health Res. 2010;20(3):293-305.
6. Link BG, Phelan JC. Labeling and stigma. In: Aneshensel CS, Phelan JC, Bierman A, eds. Handbook of the Sociology of Mental Health. Dordrecht, Netherlands: Springer; 2013:525-541.
