Language and Control

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People caring for sufferers of longterm conditions often make sense of their experiences by adopting specialist medical vocabulary. Melanie takes this approach in response to decades-long uncertainty around the diagnosis of her husband’s degenerative illness:

“There are a number of genetic conditions which present symptoms like my husband’s […] One of these conditions is Fredericks Ataxia. However, the tests were all negative and no defective or missing gene was identified in my husband. Although the general diagnosis was still genetic but the name of the condition was slightly changed to Spino Cerebellum Ataxia […] There are around 300 people in South Wales with similar ‘ataxia’ symptoms and the Heath hospital had began a research into this […]. It is now thought that condition is auto immune. This means that an anti body is attacking the body and has caused the symptoms. Another symptom of this is Vitiligo, which causes a reduction in pigmentation resulting in white patches on the body. […] However, the diagnosis is not concrete and may change again in the future.”

Louis uses a similar approach when writing about his daughter’s condition:

“At the end of this process, Prof. Chalmers concluded that Eleri’s condition should be re-diagnosed as Asperger’s Syndrome or high functioning Autism, which is on the Autistic Spectrum Disorder (ASD), with underlying ADHD and Dysphasia. At last, we had a firm diagnosis, but it had taken 24 years of her life to get to this position.”

pillgwenlly.jpgIn both accounts the naming of the illness is important. Louis implies that finding the ‘true’ name of his daughter’s condition gives him and his family some power over it. Conversely, Melanie doubts the various diagnoses of her husband’s condition and for her the quest to find its real name, and thus gain power over it, goes on.

On the other hand, some carers choose to highlight the individual rather than the condition. Recounting her mother’s last illness, Emily writes, ‘To appreciate my story you have to know my mum, so I am going to tell you a little about her’. She then goes on to describe her mother’s familial life and extensive community activities, and her strength, kindness, sense of humour. Through this the reader gets a real sense of the person before the illness is even mentioned.

Poetry is another way in which carers sometimes try to make sense of difficult and upsetting experiences that have uncertain or unhappy outcomes. Clara’s poem about her mother’s hospitalisation powerfully evokes feelings of despair and anger:

“Through dirty glass the morning haze reveals Pillgwenlly slumbering grey towards the sea Where giant turbines grind like drab pin-wheels Observed in dreadful solitude by me.

Oppressive heat surrounds me as I hear The hissing of the mattress where you lie Wide-eyed. You watch me, helpless, full of fear. I know the ‘Trust’ will simply let you die.”

In these verses the geographical context which Clara describes is a metaphor for the emotional landscape that she inhabitants. Scholars have suggested that poetry and metaphor are frequently used by patients and carers to make sense of what they are going through, seeing the act of diagnosis translating these unique ‘mythological’ accounts into a form to which general medical principles can be applied, and in the process transferring control of the illness experience from the patient or carer to the medical professional. Clara’s poem can therefore be seen as an effort to retain control over what her mother’s illness means, to make it a story of a person rather than a condition.