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 the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
– Susan Sontag, Illness as a Metaphor
Words are important. They allow us to meet a common ground, to share experiences and learn from each other. They can evoke emotions and open new friendships. They can also be therapeutic, and a way to fill the gap between doctor and patient.
Pathographies, defined by the Oxford Dictionary as “the study of the life of an individual or the history of a community with regard to the influence of a particular disease or psychological disorder” have become more popular over the years. Walk into any bookstore and you will eventually come across the health care corner: a small stack of books by people who have crossed the abyss into the land of ill health. Such stories speak of hope, love, loss and despair as patients and their families come to terms with the sudden invasion into their lives. Treading through illness can be an isolating experience, filled with pain and uncertainty.
The Database of Individual Patient Experience is a UK-based charity that runs two websites: healthtalkonline and youthhealthtalk. It was created by Dr Ann McPherson, a GP who was diagnosed with breast cancer, but found that she had no one to talk to and share her experiences with As a result, these websites are filled with patient’s experiences of their illnesses, how they coped and their family’s reactions. Such websites can open a common ground for those who are suffering, those who have just received a diagnosis and the friends and family who want to learn about how they can help.
I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy, and tired of acting as though I have something to hide.
– Kay Redfield Jamison, An Unquiet Mind
How can they help us?
Pathographies are about putting the patient at the heart of health care — a sentence that has been bounced around in today’s society. Can you truly understand what a person is going through if you have never suffered that ailment yourself? By putting experiences into words, a bridge is created between these two islands, allowing those of us who work in health care to reach our arms that tiny bit further. These stories can help us to take a step back from our jargon-filled lives. To not see the routine dialysis, but the precious hours spent with the husband. Not the dry numbers steadily increasing, but the feeling of accomplishment when one puts both feet on the ground. Illness is not just a list of problems that need to be crossed off. It is a continuous process, filled with dark corners and dead ends.
In an increasingly globalized world, a cultural lens is ever more needed. Everyone experiences illness in a different way. The culture we grew up in influences how we look at ailments, the way we handle pain and how we use our social networks to get through our suffering. It is through pathographies that these different worlds are brought together, creating a narrative, which allows us to delve inside the patient’s mind, regardless of ethnicity or race. We look beyond the clinical terms, the graphs and the numbers, and not only does this help us to see the patient through a broader lens, it also breaks barriers with the next person we meet. It will allow us to look after the ill in the way that they want to be treated, with dignity and compassion. It puts control back in the person’s hands, at a time when chaos reigns. Pathographies can help to break the formulaic clinical story. A person is not a machine with a broken part, but an autonomous being with desires and goals, whose need for help cannot always be fit into a category.
Pathographies can also help us to change our treatments, tailoring them towards a particular lifestyle. We no longer live in the world of the authoritative doctor dressed in his white coat; we let the patient’s words fill the silence.
All too often we can get caught up in the stereotypes: the smoker with COPD, the teenage overdose, the forty-year-old female with gallstones. Working in health care is a culture in itself; you are in a bubble of your own, stacking symptoms on top of patients, and then tearing them away with a blast of medication. Through patient pathographies, we can step outside of this bubble and breath the air of our patients.
Instead of opening another lengthy medical textbook, looking up the obscure and the malignant, we can open up a pathography, and step into our patient’s lives. No matter what our role, whether it’s inside health care or not, the voice of illness speaks in everyone’s ear, and it deserves to be heard.
Gunjan Sharma is a medical student.