Kristina Fleuty //
How would you describe what it is like to live with an injured and chronically painful limb? How would you communicate to a medical professional your reasoning for wanting the elective amputation of that limb?
I have recently been pondering how people talk about their bodily experiences, both to their friends and family, and medical professionals. In my previous post, I considered how people talk about experiences of pain. I discussed how being able to describe the experience of pain can be an important part of an individual’s engagement with health professionals. Although this communication might be centred on the physical body, it is often thoughts and feelings about that bodily experience that we need to communicate and put into words.
Pain might often be an individual and sometimes lonely experience, but it is universal in that most people will have a reference point for some kind of pain they have experienced. Thus, as difficult as pain might be to describe, alternatively, how would you attempt to articulate your rationale for something that many people will never have experienced? How does one communicate wanting the elective amputation of a limb, for example?
The clue might be in making use of creative language. In a previous post, I discussed creative writing and how this can be of benefit in understanding and communicating experiences of trauma. Other writings for Medical Health Humanities have ruminated on similar ideas. Authors have presented compelling evidence for the importance of creative language in medicine, as a means of communicating our relationship with our body.
In a recent post, “Identity, Metaphor, and Illness in Emily Shore’s Nineteenth-Century Journal”, Kirwan (2018) observes that Emily Shore’s experience of illness resembles that of fictional characters and suggests “that the strategy with which she approached coping with her illness may have been borrowed from literary accounts she read”. Kirwan’s exploration indicates that literary writing can help us understand shared experiences of illness and also that creative language can help us find a way to talk about our own experiences. It seems that literature can provide the individual with an expanded lexicon through which to communicate.
On a slightly different note, what of the ‘everyday’? Musing creatively and ‘writing it down’ is obviously different to needing to explain in person, such as to a health professional in a consultation room, or even to friends and family. At specific times it is important to be able to share your reasoning for wanting to take a specific course of action with your healthcare.
Kotei (2017), also writing for Medical Health Humanities, focuses, in the post “Metaphors in Medicine”, on how metaphor facilitates the communication of disease, provides a source of empowerment and helps us conceptualise the world. Kotei asks the key question of “why should patients describe their illnesses metaphorically?” To answer, Kotei discusses how metaphors “illuminate pain and suffering through the power of analogy between the patient and doctor’s lexicons” and “bridge the communication gap between the layman and the doctor”. Kotei puts forward an excellent case for the cogency of metaphor within medicine as a whole and within medical discussions between patient and health professional.
The use metaphor is individually significant, but, on the other hand, in using figurative language the speaker can distance themselves somewhat from their highly personal circumstance. Figurative language compares the body to something else, giving the patient a slight veil when having to discuss sensitive information. Research carried out in the UK (Youngson, et al., 2015) sought to better understand the lived experience of people with diabetes. Interviews were carried out with people to find out how they describe their condition, negotiate the healthcare system and self-manage diabetes. Findings from what the participants said were used to create an extended metaphor to describe the lived experience of diabetes, in the hope of giving individuals a tool to help them communicate with health professionals. Participants reported that they identified with the metaphor and that it helped them conceptualise their journey through living with the condition.
To return my thoughts to the group on which I focus in a professional capacity, military veterans, there is an assumption that the archetypal veteran is not very willing to talk or engage with health care professionals. This is a stereotype and so we should not look at ‘veterans’ as being one homogenous group. However, there is some reported evidence that families and caregivers have found the veterans to whom they are related, live with or care for, to be unwilling or unable to talk about their experiences (Russell, 2013). Perhaps literary language would give this group, who may present with unique needs, a different way to approach communication with health professionals.
Those who find themselves acquiring veteran status may increasingly have to negotiate difficult conversations with healthcare professionals and make choices about their course of medical treatment, which they might not have been expected to do in the past. For example, elective amputation may be on the increase, due to the changing nature of military service. A UK review (Fossey and Hacker Hughes, 2014) purports that due to the rise in the use of IEDs (improvised explosive devices) and associated blast injuries, recent improvements in body armour, front line trauma techniques and medical care have meant that military personnel are surviving with complex injuries, which previously they may not have. This UK review included evidence from US research papers, which suggests a similar situation within the US military. One result of this is an increase in the number of amputations. However, it also means some people survive complex trauma to their body, which can be treated to the point where injuries are no longer life threatening, but which may mean limbs lose their function or individuals live with chronic pain. Therefore, some may make decisions about possible elective amputations, to reduce living with chronic pain in limbs that are severely damaged but were not initially amputated. Veterans may find themselves needing to renegotiate decisions about bodies that have become damaged and limited in their use. Conversations may need to be had between individuals and health professionals, to decide the best course of medical treatment in response to this.
Fossey, M. and Hacker Hughes, J. 2014. Traumatic Limb Loss and the Needs of the Family: Current Research: Policy and Practice Implications. London: Blesma.
Kirwan, J. M. E., 2018. Identity, Metaphor, and Illness in Emily Shore’s Nineteenth-Century Journal. Medical and Health Humanities, [online] Available at: <https://medicalhealthhumanities.com/2018/02/21/identity-and-illness-in-emily-shores-nineteenth-century-journal/>.
Kotei, C., 2017. Metaphors in Medicine. Medical and Health Humanities, [online] Available at: <https://medicalhealthhumanities.com/2017/10/26/metaphors-in-medicine/>.
Russell, S. S., 2013. Veterans’ stories: What they may have to tell us – A personal reflection. Urologic Nursing, 33(2), 92-96.
Youngson, a., Cole, F., Wilby, H. and Cox, D., 2015. The lived experience of diabetes: Conceptualisation using a metaphor. The British Journal of Occupational Therapy, 78(1), 24-32.