I have been producing some creative work over the past three years based on my lived experience of having hepatitis C (now cured). Hepatitis C is a viral liver disease passed on by blood-to-blood contact and it is frequently associated with drug use and needle sharing. The long-term presence of stigma and very poor health made my life, at times, unpleasant and difficult. I was careful who I told about my health status, due to the assumptions they might make about how I got infected. During the time I was ill, there were moments of shame mixed with frustration, anger, and disappointment. For example, when I applied for PIP (Personal Independence Payment), it became clear to me that it was an administrative process, devoid of empathy or insight into hidden conditions and the internal physical damage they can cause. The process was, if not humiliating, then at best a bureaucratic form-filling exercise where my material and physical needs went unnoticed and unmet (see Violent bureaucracy: A critical analysis of the British public employment service, by Redman and Fletcher, for more on bureaucratic decision-making). The way that shame operates, making the individual feel alone with their dilemma, can leave them bewildered and unsure. It’s hard to advocate from such a position, particularly if you feel ill. So, I had the health problem itself to deal with – in my case fatigue, joint pain, digestive problems, itchy skin and ‘brain fog’ – plus the uncertainty about how to manage and cope in daily life.
Shame and stigma suffuse aspects of life with hepatitis C right from the time of diagnosis. It is a notifiable disease, meaning that healthcare providers must report a patient’s infected status to the relevant authorities. For me, going to the dentist or going to get blood tests meant that I was concerned for the clinician: what if they came in contact with my blood, what if they got infected because of me? There was a constant surveillance of situations and settings: who could I disclose to, who could I confide in, what risks might there be in telling others? All of this covert decision-making impacts the individual, limiting their help seeking behaviours and isolating them from society. To some extent, this wary watchfulness may be more readily understood since the Covid-19 pandemic when many of us became viral vectors; we needed to seclude ourselves, protect others, and also cope with our body’s struggles to clear the virus.
So, for all the above reasons, and in part owing to the failure of words alone to express what I went though, I have been working with an animator to produce an animated film ‘In Spate’, which is a fictionalised account of a woman’s experience of living with hepatitis C. It is my way of showing and telling what it was like to live through it. The aim is to destigmatise and make a hidden experience knowable to others. I can’t undo what happened to me and other patients, but I think that shame and its associated negativities can be countered or at least challenged through speaking out about such experiences.
Accompanying animated video: Seeing the Patient
17th April 2023