The Unseen Life Drawn Out

Video presentation highlighting the lived experience of having hepatitis C, an accompanying piece to the upcoming film In Spate.

Transcript

Title card: Presentation: The Unseen Life Drawn Out by Dr Sarah Skyrme.

Sarah Skyrme: The lived experience of having hepatitis C can overwhelm the individual’s life, flooding the blood with the virus, and also inundating their world physically and emotionally. Hepatitis C is a viral infection that affects the liver, and it was first identified in 1989. it’s passed on through blood-to-blood contact such as a contaminated blood transfusion, unsterilised tattooing equipment, or needle sharing, and there’s currently no vaccine. Once infected, people may have symptoms like fatigue, jaundice, digestive problems, and complications leading to liver cirrhosis and in some cases death; the varied symptoms can be misdiagnosed with the underlying disease going untreated.

Due to the association with needle sharing, it’s a stigmatised condition, and when this is combined with exhaustion and poor health, it is difficult for individuals to advocate for themselves, for this reason the use of a combination of words and animation can illustrate how the disease impacts lives as:

animation goes beyond just visualizing unfilmable events. It invites us to imagine, to put something of ourselves into what we see on screen, to make connections between non-realist images and reality. [Honess Roe, 2011]

Disrupted sleep, money worries, fears for the present, and anxiety for the future often go unmentioned at hospital appointments, yet they are a very real part of the illness experience. A sense of despair, loss and uncertainty can lead to a crisis of emotional and mental distress and in the depths of the night, fears are as real as the waking life.

News that life-changing antivirals had come out of clinical trials and could eradicate hepatitis C was exciting news for patients, but due to their expense, the NHS rationed them, meaning that only those with liver cirrhosis were eligible.

This meant that patients who went untreated were often too ill to work, but may then also be failed by the benefits system because hepatitis C is invisible, causing damage deep inside the body. Applying for benefits can be a demoralising experience, and these gaps in our health and social care system prolong or create forms of suffering and stress.

Some patients who were desperate for a potential cure, chose to import their antiviral drugs through a buyers club, a process that can feel risky as they are acting without the direct sanction of their doctor.

In the UK, since 2018, most patients have had access to the drugs via the NHS, but prior to this they had to deal with the frustration that accompanied delayed access to treatment, and deteriorating health.

Hepatitis C remains a silent disease, infrequently spoken about and often diagnosed at a late stage in the illness. A lack of information and a sense of stigma persist around the disease, and I hope that speaking up highlights the reality of this illness and the need for understanding and support.

Credits card:

a presentation by
Dr Sarah Skyrme
Animation by
Jeremy Richard
This presentation was partly funded by
The University of Manchester

[References card

The Unseen Life Drawn Out by Sarah Skyrme is licensed under CC BY-NC-ND 4.0