Text: Sabine Winters / Photo by sebastiaan stam on Unsplash
‘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. Although we all prefer to use only the good passport, sooner or later each of us is obligated, at least for a spell, to identify ourselves as citizens of that other place.’ – Susan Sontag (2002)
This essay provides a reflection on the diagnosis of migraines and the function of language use about the disease. Public perspectives on migraines and terms used to describe (symptoms of) the disease have created a relationship between the characteristics attributed to patients and the actual disease itself. This essay examines the language that is commonly used regarding migraines, and how that language creates stigma.
Introduction
In Illness as a Metaphor, Susan Sontag argues that uncovering and eliminating the metaphorical use of language around disease is of critical importance. She aims to lift the suffocating veil of taboo surrounding disease and the mystification of illness and, in doing so, uncovers the truth. Her work does not simply provide a list of the ways that language can conceal and distort. Rather, it explores the social contexts behind language use, as well as the effects language has on patients, scholars and the public.
In this light, I seek to explore the topic of migraine headaches by employing a constructivist point of view to explain how language that is used to define migraine headaches goes hand in hand with the stigmatization of migraine suffers. This paper draws upon a number of works, including Haan’s Migraine as Text – Text as Migraine, Susan Sontag’s Illness as a Metaphor and Jeffrey D. Ford’s Organizational Change as Shifting Conversations. In addition, I rely on the findings of Simy K. Parikh and William B. Young’s work, Migraine: Stigma in Society to support my argument.
First, this paper explains how the diagnosis of migraines is largely dependent on language constructs. Second, the discussion then focuses on the role of language in describing pain, and how this became a stigma among migraine patients. Finally, the last section of the essay aims to change the conversation about language use relating to migraines. What would happen if medical experts began to view migraines as a disorder, rather than a disease?
Migraines as a Construct
The constructivist view provides that reality is constructed though the use of language. If one wishes to understand reality, we he or she must investigate how a construct has been built though the use of language. Additionally, our understanding of reality is not a reflection of the underlying structures of the world itself, nor is it a reproduction of these structures; instead, our understanding of reality is a construction to make sense of reality.[1] What if, then, this constructivism also applies to medical diagnoses of migraines, when our knowledge of migraines is a construction created in the process of making sense of reality?[2]
Haan mentions that we often forget that a diagnosis is a determination that a disease exists based on a constellation of symptoms. In the case of migraines, there is little to no data or empirical evidence, such as blood or lab tests, for doctors to base their diagnoses on. The diagnosis must largely be made on a doctor’s interpretation of the patient’s description of the pain symptoms he or she is experiencing. For example, according to several criteria, the pain associated with migraines typically manifests in unilateral pain, which is moderate to severe, and becomes worse with exertion. If a patient does not identify at least two of these four characteristics, the doctor cannot diagnose their pain as a migraine. When a patient is labelled with migraine diagnosis, it also imports new meaning to his or her pain symptoms. For example, after a diagnosis, the patient will no longer view a severe headache as merely the occurrence of a severe headache, but instead view it as a migraine attack, a symptom of a disease. Hence, once a doctor diagnoses a patient with migraines, a new paradigm of reference and meaning for the patient emerges.
Research shows that such use of language can make a vital difference in a patient’s diagnosis experience. For example, in Williams and Thorns’ 1989 work, Pain Beliefs and Perceptions Inventory (PBAPI), the authors investigated the conceptualization of pain, what pain is and what pain means to patients. They found that certain pain-related beliefs, such as the belief that pain is something mysterious, had negative impacts on outcomes; these beliefs worsened patients’ experience of pain, namely through increased psychological distress and somatization. [3]
With respect to migraines, pain and patients’ descriptions of pain play an essential role in determining a diagnosis. This is because migraine diagnoses depend on the use of language and the veracity of a patient’s memory of the pain. Thus, there is a distinction between what a patient says and what is measurable. In general, doctors tend to prefer using objective measurements to reach a diagnosis, rather than relying on what patients say.[4]
Moreover, doctors cannot test for migraines in a laboratory. No clues are to be found in a migraine sufferer’s blood, brain scans are often inconclusive and there are no experiments to obtain evidence on which to ground a diagnosis. Language use and a patient’s description of symptoms is therefore an important indicator to establish a migraine diagnosis, but unfortunately this approach comes with problems. Haan describes a process in which a patient’s description of their symptoms is combined with the doctor’s interpretation to reach a diagnosis, despite the complexity of the situation; in such a case, the doctor, ‘in (attempting to) cure someone, at least this unreliability of the words used for diagnosis and it has to be overcome.’[5]
Human use of language involves responding to another person’s statements in a way that is appropriate given that context. With regard to the relationship between a patient and his or her doctor, the doctor is trained to react to a patient’s description of symptoms in a certain way, in the context of a doctor and patient relationship. In every conversation, we are cognizant of whom we are talking with and adjust our language use accordingly. For example, when explaining pain symptoms to a doctor, the patient might rely on metaphorical descriptions to express his or her highly subjective experience of pain to the healthcare professional. Such descriptions might include ‘it feels like a sledgehammer is hitting my brain’ and ‘it feels like an army has invaded my head’. The doctor will have to interpret the patient’s descriptions and then explain the diagnosis in medical terms and react in an appropriate way for example by providing the patient treatment for migraine.[6]
Sontag writes that when a patient is diagnosed, the patient often feels like he or she is passing from the realm of the healthy to the realm of the ill. Patients may no longer associate with the vocabulary of the healthy; this transition to the realm of the ill is accompanied with a different vocabulary: a vocabulary of the ill, of the patient.[7] This is what Sontag refers to as the ‘metaphorical ladenness of words’. This ladenness not only carries direct meaning, but also includes hidden values. For example, cancer became metaphorically laden in the 1970s. At that time, cancer was described as a bodily manifestation of a psychological disease, such as supressed emotions or feelings that had caused a proliferation of cancer cells. This belief implied that a diagnosed patient was guilty of having suppressed feelings and emotions, carrying a moral weight.[8]
Unlike cancer, migraines do not carry the possibility of a fatal outcome and can often be suppressed or treated with medication. However, migraine patients do not escape (self)stigmatization and even the socio-economic impact of the condition, because of persistent representations and stereotypes which still persist in society. In the next section, I explain why patients are still ashamed to discuss their suffering from migraines freely and openly, despite the plethora of ways to treat the condition and how this is related to metaphorical language use.
The Origin of Pain
To shed a light on how the concept of migraines is embedded in society and the medical field, I provide a brief synopsis of the history of the perception of pain. I detail how perceptions end description of pain stayed persistent through the centuries, beginning in the 4th century BC.
The controversy over whether pain is something that comes from within oneself dates to the time of Hippocrates. In the 4th century BC, it was believed that pain arose from an imbalance of the body with the external environment, allowing an object like pain to enter the body. The noun, ‘pain’, came to be treated as an object, like the words ‘cabinet’, ‘leg’ and ‘dog’. For example, pain is often described as ‘it’, as if it were an entity from the outside that attacks one’s body.[9]
Given that this ontological categorization of pain as an object or entity emerged at the beginning of medicinal studies, the concept of pain was not only categorized in language, but also created an ‘ontological trap’.[10] The consequences of this ontological, objectified categorization of pain included the emergence of moral connections. The general idea was that pain enters a patient’s body as a result of an imbalance within the patient. Some believed that patients experiencing pain had not taken good care of themselves. If patients were unable to block or remove the pain from their bodies, even with aids such as painkillers, some thought this was evidence of a patient’s weakness.[11] These are questions that appeal to patients not only from a medical point of view, but also because of they carry a moral conviction; one might ask whether someone who experiences pain is incapable of caring for him or herself or has failed to live a balanced (i.e., Christian) life.[12]
Even in modern society, the stigma around migraines persists, at least in part because of the general mystification of pain in general. Pain and disease are still often described as ‘it’, as an external entity or object apart from the ‘self’ that invades our bodies and damages our lives. [13] It is argued that by using this language, patients need not identify themselves with the disease or disorder. It is a way to make sense of a complex and often emotional situation that can involve shame and anxiety.[14] However, according to Susan Sontag, this use of language, which she refers to as metaphorical language use, creates a taboo around discussing disease and inflicts feelings of shame and anxiety on patients. She writes that terms like ‘it’ as reference to pain and phrases like ‘fighting cancer’ and ‘losing the battle against cancer’ inflict moral harm on patients through the implicit meaning of the sentences.[15] Such concepts are not limited to cancer, which Sontag discusses, but can also be applied to the topic of migraines. For example, in common parlance, one has a ‘migraine attack’ and ‘fights the pain with pain killers’, and people who suffer from migraines are ‘migraine victims’.
This use of language to describe disease is not without consequences. Although it creates a distance between the identity of the person and the disease, it implies a moral connection between the person and the disease; it turns the person into a ‘patient’. For someone whose identity is partly determined by suffering from a disease, he or she is simultaneously on some level responsible for having and winning or losing the ‘battle’ against the disease. Such processes are rooted in social understandings of migraines, as well as in the way people with migraines view with their diagnosis.[16] Further, the stigma affects how people who suffer from migraines view themselves and treat the disease.
Stigma and Science
In medical perspectives, pain is often seen as an expression or a symptom of something; pain is a subjective expression of an experience, which cannot be objectively measured. Pain is therefore not seen as an isolated signal, but as a symptom, accompanied by objectively measurable abnormalities.[17] When an identifiable cause of the pain can be found in a patient’s body, others’ descriptions of the pain are often metaphorical; instead of saying ‘she has pain in her head’, one would say ‘she has a brain tumour’. This metaphorical use of language shifts the pain symptoms from the invisible, subjective world, to the visible, measurable and objective world.[18]
However, while science has made progress in understanding disease, the metaphorical representations and the properties attributed to patients remain deeply rooted in society. For example, Sontag writes of the similarities between cancer and tuberculosis patients, in which ‘TB is presented as a disease of poverty … [caused by] poor hygiene [and] inadequate food’ despite the fact that ‘[s]uch identification of the disease with social aspects was often proved wrong [in science]’.[19]
The de-stigmatization begins with the demystification of pain. Haan writes that it is important to acknowledge one’s own pain. [20] By recognizing that one’s own pain is a real experience, the person thereby accepts that others might also have experiences with pain. The question is thus how people who haven’t experienced pain related to migraines, can reach this realization regarding migraines.
Living with a chronic disease is stigmatizing, often resulting in a disruption of social and family supports, a decline in productivity at work and reduced a quality of life. In addition, the internalisation of these metaphorical representations (myths) in daily conversation may lead to the (self)stigmatization of patients, which has both individual and societal impacts. Internalized stigma among persons with migraines can lead to the development of trust issues regarding the health care system and negatively affect work and social relationships.[21] Young and Parikh show in their paper that people with chronic migraines have a lower quality of life than people with episodic migraines among other because of the socio-economic impact of the stigma. These results suggest a relationship exists between internalized stigma and quality of life in people with chronic migraines.[22]
Consequently, it is of great importance to explore how to diminish stigma surrounding migraine patients, and perhaps diminish stigma more broadly in relation to other chronic health conditions. Science may not necessarily offer the solution to this problem. The answer may lie in the language people use about migraines.
Representation as Reality
In the next part, I explain how and why self-referentiality in science could pose a problem for the diagnosis of diseases that lack physical objectivities, such as mental disorders or pain disorders like migraines. The section elaborates on the first- and second-order reality theory by Paul Watzlawick, as employed in the paper Organizational Change as Shifting Conversations by Jeffrey D. Ford.[23]
Watzlawick’s theory is based on first-order and second-order realities in conversations. Within the constructed realities of diagnoses, one can distinguish between first-order and second-order realities. First-order realities are those that represent uninterpreted data and facts, such as the physically demonstrable and publicly observable qualities of a disease. To demonstrate their existence, first-order realities are thus composed of our systematic and empirical knowledge. These types of reality require a set of linguistic conventions and vocabulary to evidence their existence. For example, when one talks about migraines, one must be able to discuss the set of physical or observable symptoms that are attributed to migraines. [24]
The distinction between first-order and second-order reality is that second-order reality is represented by actualities that are constructed when one assigns meaning, value or significance to a first-order reality.[25] Second-order realities create a reality apart from first-order realities because ‘the consequences of these attributions of meaning create concrete results of a person or situation’.[26] Moreover, people act on the basis of their interpretations of first-order realities, such as a doctor who prescribes medicine to treat a patient’s migraine.
The difficulty with migraines is that there is a very thin first-order reality upon which to construct the second-order reality. There is little to no objective data, since in the first place migraines are almost completely dependent on language-based descriptions and interpretation of those descriptions.[27] As a result, the two realities represents a merged reality, in which facts and interpretations are one and the same. [28] In other words, individuals relate to their perceptions as they are in the world; their perceptions become a reality that is independent of them. In addition, society will endorse these realities by searching for evidence to support them, affirming the representations. Hence, what people experience depends on their representations, leading to self-fulfilling prophecies in which the representations themselves create new facts.[29]
Stigmatisation of migraine patients then, results from scientific and social failure to recognize and to attribute the differences between the two realities and to understand the nature of their interconnection.[30] This means that when someone is diagnosed as a migraine patient, society attributes its interpretation of migraines to that person. For example, colleagues of an employee diagnosed with and known by colleagues to be suffering from migraine episodes might attribute properties to that employee, like being unreliable, having a low pain tolerance or being unable to take care of him or herself. The attributions about migraine patients are not first-order realities. Instead, they are qualities ascribed as if they were first-order realities.
Ford’s article confirms the findings of Young and Parikh in the sense that first- and second-order realities are not constructed by direct personal experiences but are instead created through conversations in culture, traditions and institutions in which individuals are socialized. Conversations are interchanges of (implicit) values between people. Through these conversations, individuals gain ‘knowledge’ about things with which one may have little or no direct experience; the judgments and understandings (i.e., representations) of others have been transmitted on to others through conversation. [31]
As Latour wrote: ‘[s]cientific facts are like trains, they do not work off their rails. You can extend the rails and connect them but you cannot drive a locomotive through a field.’[32] The train – as a metaphor – is employed to underline the self-referential system of medical science, it tends to make sense to a doctor to diagnose migraine, only insofar it fits into the description of migraine.[33] However, as mentioned earlier, science (and in this case, medical science specifically) does not have the necessary or sufficient tools to define and diagnose migraines in objective terms. Moreover, Haan states that because of the lack of objective evidence, the process of diagnosing migraines is a product of science that is constructed in language.[34] Thus, it is of utmost importance to recognize that the diagnose of migraine does not entail a first -order reality, but a second-order reality.
Paradoxically, the problem might also contain the solution, because when values are imposed on an individual through conversation, that individual also has the ability to change the discourse.[35] Because second-order realities provide the context in which first-order realities are presented, small changes in the second-order representations can lead to fundamental and practical changes in the stigmatisation and identity framing of migraine patients. If science then allows dialogue on the uncertainty around migraine diagnoses, it would create space to restructure and re-frame the language used in the conversation. Since constructed realities precipitate different interactions, shifting realities are indicative of different interactions, in this case with a focus on the diagnosed patient. One must ask whether scientists are prepared to embrace the uncertainty of diagnoses and assume the responsibility of acting as agents of change in this conversation. [36]
Changing the Conversation
The fused first- and second-order reality grounds stigma about migraines that affect the social attitudes towards migraine patients, imposing an additional burden on these individuals and isolating them from members of society who ought to be supporting them.[37] Although migraines can be treated in most cases using a wide range of medicines and migraine suffers can function normally, these stereotypes about migraine patients are persistent because of the long history of metaphorical language about pain. In order to change the conversation and establish constructive relationships with illness, the dialogue needs to change. The first step is that to understand that facts do not dictate meaning, and that words are carriers of meaning within a broader network of meaning. Hence, it is important to be aware of and distinguish between the two realities.
Ironically, an almost poetic approach is required to set this change in motion. For example, medical experts could assume the role of change agents, beginning by reframing the notion of ‘pain’ as something that is not an object or entity of some sort that enters the body, but rather a type of event that comes and goes. Bourke writes that by rephrasing pain as a type of event, the ontological trap of viewing pain as an entity that invades the body can be avoided.[38] Pain thus becomes a belief or conviction about one’s state of being, but it is transient. In doing so, the veil of mystification of what pain is, is partly lifted. An event is connected to time and space. It is not an entity that exists on its own. One can explain an event as something that is happening within the body, and although there are no clear answers yet in how and why migraines happen, it is clear that migraines are not something external that invade our bodies and attack at random.
Beginning from similar reasoning, Haan argues that to alleviate the stigma surrounding migraine patients, we should diagnose migraines as a disorder, rather as a than disease. Whereas diseases have, by definition, an impact on the agent, a disorder is merely a brief state of disability, and disorientation. The diagnosis then relates only to the transient episodes, rather than relating to the person as a whole. This linguistic approach may sound like a small and insignificant difference. However, as this paper demonstrates, narratives play an immensely important role when it comes to interpreting pain symptoms and diagnosing migraines. Furthermore, the narrative of migraines as a disease plays an important role in overcoming the stigma associated with migraines. From this perspective, I agree with Bollen in her essay Who is Crazy? The Fine Line Between Healthcare and Nightmare that language use plays an essential role in the ever-shifting process of creating identities through societal conversations.[39] Rebranding the condition could diminish stigma towards migraines. This would involve delivering a unified message on the epistemology of migraines and using language that depicts migraines as a legitimate condition that affect but do not define an individual.[40]
Conclusion
The goal of this short essay was to demonstrate that use of metaphors about illnesses can be harmful, or at least stigmatizing.[41] This is because metaphors create a reality through a network of meanings, based on pre-existing meanings in that language, rather than on data or objectively provable physical observations. This can be a major problem because stigmatization is passed on to people, who impose self-stigmatization as a self-fulfilling prophecy. Migraine headaches are a prevalent disease with a substantial socioeconomic impact. Not only do migraines prevent patients from participating in social activities and attending work or school, they also entirely consume a patient during an episode. This is not only because patients are in unproductive states during a migraine, but they may also experience anxiety in between migraine episodes, fearing the resurgence of the pain. Furthermore, they may feel anxiety to communicate their experience to others because of the societally constructed image of migraine patients.
Although migraines can be treated in most cases using a wide range of medicines and migraine suffers can function normally, these stereotypes about migraine patients are persistent because of the long history of metaphorical language about pain. As a result, patients’ quality of life deteriorates. Sontag shows in her work that a healthy relationship with pain may be impeded by metaphoric language use, because it mystifies the illness and shrouds the illness in the mist of taboo.
Although metaphors have been proven to be persistent, by keeping the dialog open and self-reflective, questioning meanings and demanding clarity in communication, one can prevent mystification and mythology from creeping into the conversation (between patient and doctor.) Everyone benefits from keeping the dialogue about pain open, precisely because it is a personal experience, and because sooner or later, almost everyone must deal with a life-changing pain experience. In order to do so, it requires self-reflection of science and involved agents, from medical expert to the patient themselves and their social network. Education and advocacy are critical elements to rebranding migraine and reducing stigma in society.
[1] (Ford 1999, 481)
[2] (Ford 1999, 480)
[3] (Herda, Siegeris, and Basler 1994)
[4] (Ibid.)
[5] (Ibid, 1)
[6] (Ibid.)
[7] It is worth noting that ‘patient’ comes from the Latin word ‘patior’ , meaning ‘I suffer’.
[8] (Sontag 2002)
[9] (Haan 2020)
[10] (Bourke 2017)
[11] (Sontag 2002)
[12] In the article Migraine: Stigma in Society by Simy K. Parikh & William B. Young, indicated that with the development of the Scientific Revolution in the 17th century, migraine, like other indictable diseases, may have lost its medical justification because it could not be pinpointed by anatomy.
[13] Both Sontag and Haan write about how pain and diseases are objectified as something that invades the body.
[14] (Dewulf and Bouwen 2012, 169)
[15] (Sontag 2002, 57)
[16] (Parikh and Young 2019,2)
[17] (Haan 2020, 7)
[18] The word ‘cancer’, comes from a description of Greek medic Galen (c.130 AD – c.210 AD) who wrote about tumours as, ‘crabs, with crab legs -with which he referred to the swollen veins around the tumour. (Sontag 2002, 11)
[19] (Sontag)
[20] Haan stresses the importance of a professional diagnose by a doctor or specialist, and in turn the importance that doctors take their patients seriously, through attentive listening.
[21] (Parikh and Young 2019,2)
[22] (Ford, 1999)
[23] (Ibid.)
[24] (Ibid.)
[25] (Barrett 2008)
[26] (Ford, 1999, 482)
[27] It would be of interest to take into account the cross cultural descriptions of pain, in order to get a better understanding of metaphors used regarding to pain. Because of the focus of the paper on migraine in Western society I won’t elaborate further on this topic.
[28] (Ford, 1999, 482)
[29] (Ford, 1999, 483)
[30] (Ibid.)
[31] (Ford 1999)
[32] (Timmermans and Berg 1997, 274)
[33] (Aarts 2015, 12)
[34] (Carolan 2008)
[35] (Ford 1999)
[36] (Ford 1999)
[37] (Parikh and Young 2019)
[38] (Haan 2020, 7)
[39] (Bollen 2020, 1)
[40] To what extend ‘disorder’ would be a good substitute for migraines rather than ‘disease’ is explained in Haan’s dissertation.
[41] The reason why people use metaphors has not been discussed in detail, but would be an equally interesting topic to explore.
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