Illness narratives

Illness narratives are personal accounts of illness experience. The illness experience is
powerful, and practitioners of biomedicine are often unfamiliar with the patient’s experience of
an illness. Medical anthropologists typically take the patient’s perspective because methods such
as ethnography emphasize emic analysis (Brown and Barrett, 2010). Illness experience is patient-
centred and includes looking at the social and psychological dimensions that cannot be cured by
medicine.

Metaphors and language in narrative

A metaphor is a figure of speech in which a word or phrase is applied to an object or action in

which it is not literally applicable. It generally equates two things together. Metaphors are often
used in poetry, music or writing to illustrate something. Here are some examples from songs:

 “Baby, you’re a firework”

 “Love is a battlefield”
 “In the cold light of day, we’re a flame in the wind, Not the fire that we’ve begun.”

In our society, metaphors are not just confined to talking about love, we also use metaphors to
talk about illness. We see metaphors used by both patients and healers to describe things. In
1978 Susan Sontag, a cancer patient herself, wrote Illness as Metaphor a book in which she
talked about the metaphors and myths surrounding two particular illnesses: cancer and HIV.
Sontag (1978) argues that cancer is not a curse, a punishment and certainly not an
embarrassment. It is important to realise that when she was writing the book, cancer was
associated with a personal psychological issue known as “cancer personality”, in which patients
were thought to have brought the cancer upon themselves by having a resigned, repressed, and/or
inhibited personality. At the time, the treatment for cancer was psychotherapy, which was
supposed to help overcome the cancer by encouraging the patient to consciously choose to give
up the emotional benefits the disease created for them. In reality, this came down to blaming the
patient for having cancer!

Narrative as storytelling
Telling stories is a central human activity around the world, and one that is often prized.
Narrative is defined as “a discourse featuring human adventures and sufferings connecting
motives, acts and consequences in causal chains” (Mattingly 1998:275). Narratives are stories
about specific events or a series of linked events in which the actors perform specific behaviours
with socially meaningful outcomes.

Why do you think that humans tell stories? Some reasons include:

 Explanation – for themselves and others about how or why something happened. E.g.
Why is this happening to me?
 Therapeutic value in telling and retelling
 Managing chaos and making decisions

Winkelman (2009) discusses how illness narratives are akin to storytelling. According to
Whaley (2000) storytelling creates connectedness and understanding through linking the
sufferer’s past with the social context, giving an acceptable explanation within the patient’s
worldview that provides a sense of confidence of mastery or control over the illness. This makes
sense. Illness is something that often happens to people out of nowhere and people use
explanatory models to make sense of their experience. The placement of sickness stories within
religious or mythical contexts provides psychological integration by linking the individual’s
suffering to broader contexts of positive expectations or endurance.

Healers, Patients and Illness narratives

Kleinman (1988) criticizes medical education for focusing on disease at the expense of the
patient perspective. He calls on physicians to engage in a model of clinical care he calls
“empathetic witnessing.” Rather than taking a strict patient history, empathetic witnessing
involves “the existential commitment to be with the sick person and to facilitate his or her
building of an illness narrative that will make sense of and give value to the experience”
(Das Gupta and Charon, 2004).

Arthur Kleinman is credited with the idea of actually listening to patients talk about their
experiences. His book The Illness Narratives has been one of the most widely read books in
medical anthropology (Briggs, 2011). For Kleinman, narratives perform crucial functions in
illness and healing, enabling “sick persons to order, communicate, and thereby symbolically
control symptoms” (1988:49).

Mishler (1984) and Waitzkin (1991) argue that these kinds of narratives that emerge during
doctors–patient interactions do not spring directly from the patient’s illness experiences but are
co-produced, shaped by great differences of power. Evidence of this is seen in patients’
narratives that incorporate biomedical epistemologies, sometimes as a means of shaping their
reception by physicians (Singer et al. 1988).

Several researchers have shown the utility of illness narratives to clinicians. Brody (1987) states
that these stories illustrate how general scientific knowledge is applied to individual cases and
particular patient problems, while Loewe (2004) suggests that illness narratives represent an
important source of information for educating providers and consumers about the impacts
that disease and diagnosis have on people’s lives, addressing the destabilizing effects that
maladies—and biomedical treatment—have.

Impact of illness stories

Illness narratives are not just stories, they also represent powerful ways that patients can heal.
Pennebaker’s (2003) found that patients who shared their stories of illness showed clinically
measurable improvements in their immune system functioning. Jewish Americans Holocaust
survivors who did not talk about their experience of internment trauma had poorer immune
outcomes than those who expressed their traumatic past. These disclosures provided a narration
of life and self that fit with cultural norms regarding the sharing of experiences as a part of the
mourning process. This study illustrates that the process of telling stories of one’s malady
provides meaning to life experiences.

Helman (2001) discusses Frank’s (1995a, b) work which found illness accounts that patients
provide in restoring their sense of empowerment, agency, and care of the self. These narratives
allow sufferers to cast off the stigmas that have been ascribed to them and their condition, and
allow them to rewrite their medical history and recovery. Moreover, narratives can connect
sufferers to a social network of similar people and together they can turn a stigmatized condition
into a fight for basic human rights (e.g., the AIDS movement). Their dialogues may function to
reconstruct their situation in honorable terms, alternative histories that characterize the formation
of their victim status or their heroic efforts to heal despite dismal odds of success. These stories
of success can provide the motivation for overcoming the limitations imposed by their illness; in
this sense, illness narratives may convey the effort to succeed despite medical conditions.

The healing power of illness narratives comes in part from the way in which the stories’
expression transforms how we understand the trauma and how we think and respond to it
emotionally. The creation of the story of illness provides a narrative that assists in confronting
the anxiety produced by trauma (Winkelman, 2009).

Illness narratives also act to make the illness or trauma and its impact, consequences, outcomes,
and implications manageable for sufferers. Through words illnesses can be defined and
controlled within the patient’s conceptual frameworks and assist in management of the emotional
effects of the traumatic experiences, leading to improvement in both physical and mental health
(Pennebaker, 2003). By creating a coherent narrative, the logic and consistency allow for
rationalization of disturbing or anomalous aspects. Pennebaker suggests that words also have the
power to reformulate the experience and definitions of self, empowering by defining the nature
of the previously vaguely experienced trauma in reference to a social context.

Embodiment

One important aspect discussed in the textbook chapter is embodiment, but this can be a tough
concept to understand. Embodied human experience looks at concepts of the body (or bodies).
The textbook mentions several ideas from philosophy that talk about the body. We all have a
body, but we often get stuck with the dualism of mind vs. body.

Think about how the body internalizes cultural meanings. Body sensations are culturally
mediated. What does that mean? Way people feel invasive forces, representations of the body,
how shape the body, but it is also ideas about how our bodies should look and what they should
do.

Stigma
One of the important issues touched on in the textbook chapter is stigmatization.

“Stigma” was originally a classical Greek term for a permanent mark that branded a person as a
criminal, traitor or slave (Barrett and Brown, 2008). Goffman (1963) defined stigma as a social
phenomenon in which an individual is devalued or shunned because the illness or disability
makes the person different or “not normal”. This basically amounts to negative
discrimination. Stigma creates long-lasting suffering, that is often worse than the symptoms of
the illness. Barrett and Brown (2008) argue that stigma is more than just a negative outcome of a
certain disease, but it is an illness in itself, comorbid.

When the illness is “invisible”, for instance in the case of genital herpes, there is often a dilemma
of disclosure for the sufferer. Disclosure risks not only social rejection, but also the possibility
that an individual’s health status information may become more widely known. This information
management is something that needs to be negotiated with every partner (Inhorn, 1986).

How does this fit in with the ideas about being diseased but not being ill that were covered in the
last module?

Medicalization

Medicalization is touched upon in the chapter and it is something we will come back to in the
module on biotechnology. Medicalization literally means “to make medical” and basically it is
the idea of making something that was not previously a medical condition, into a medical
condition. Clarke et al. (2003:161) find that the growth of medical jurisdiction is “one of the
most potent transformations of the last half of the 20th century in the West”. Medicalization
describes a process where a problem is defined in medical terms, using medical language and
understood through the adoption of a medical framework or “treated” with medical intervention.
The assumption is that doctors or physicians are behind medicalization, but this is not always
true.

Example – Alcoholism.

In the case of alcoholism, medicalization primarily occurred by means of a social movement,

Alcoholics Anonymous (AA) and physicians were late adopters of the idea of alcoholism as a
disease. Alcoholism is one example of the medicalization of something previously considered a
deviant behaviour, other examples include mental disorders, addictions, learning disabilities and
child/sexual abuse. These behaviours were once defined as immoral, sinful or criminal, but now
they been moved from the category of “badness” to the category of “sickness”.

Just as things can be medicalized, they can also be de-medicalized because conditions expand
and contract. Illnesses affecting women have disproportionately become medicalised, examples
are found in areas of reproduction, childbirth, birth control, premenstrual syndrome (PMS),
menopause, cosmetic surgery.

Example – Premenstrual syndrome

In recent years, premenstrual syndrome (PMS) has increasingly been seen as a problem of
pathology or hormone deficiency rather than normal physiology. PMS refers to the cyclical
recurrence of physical, psychological and behavioural changes that begin during the week prior
to menstruation and disappear soon after menstruation has begun. Changes include: fluid
retention, soreness of the breasts and abdomen, acne, cravings, fatigue, irritability, tension,
anxiety, sadness, moodiness, constipation or diarrhea, feeling out of control, insomnia, and
changes to sex drive (Chrisler and Gorman, 2015). Considered a hormone imbalance – treatment
with progesterone injections initially, but other treatments include birth control pills, or
antidepressants.

Gottlieb (1988) describes the symbolic nature of PMS in contemporary USA as being the
opposite of what is expected of women, a form of symbolic inversion of the idealised behaviour
for women for the rest of the month – i.e. nice, quiet, selfless, kind, in control, giving. Women
are permitted, or even encouraged, to oscillate between these extremes. PMS also characterises
women as being closer to nature (nineteenth century ideas about women), using language like
“monthly monster”, “inner beast”, “riding the crimson wave”, these suggest women are
controlled by their cycles, and place women in a victim role, as powerless over their own bodies.

What is driving medicalization? And is it good or bad thing?

Research into medicalization suggests that both increasing technology in the medical field as
well as the increasing power of pharmaceutical companies (especially in the United States) may
be responsible for the growing numbers of medical conditions. We see this in the
advertisements on the television, encouraging people to talk to their doctor about various new
drugs, and changing the dynamic of the doctor-patient relationship. We can ask ourselves: is it
more comforting to have an illness? To be diagnosed? What does re-casting PMS or alcoholism
as a disease do for us? To a degree, it removes blame on the individual and provides a path
for treatment, an answer that means it was not our fault to begin with and there is hope for
a brighter future.

Many argue the process of medicalization has benefits: removal of stigma, relief from symptoms,
normalization of experience. Critiques of medicalization worry about overmedicalization.
Criticisms also come from those who suggest medicalization results in the biomedical profession
intruding on experience of everyday life, leading to unnecessarily medical treatments and
causing iatrogenic effects. The movie The Business of Being Born, shows an increasing use of
c-sections to deliver babies, many of which are considered unnecessary surgeries. By making
everything into a pathology, human differences are turned into illnesses or conditions
(baldness, shortness, hairiness, breast size). In considering these and other things we can find
some pathology in virtually everyone. A pill for every ill or an ill for every pill?