Speaking the Unspeakable specifically addressed vulval disease and began with the idea that a combination of easier access to patient-focused information about symptoms and treatment, along with a greater public awareness and acceptance of vulval disease as a rare yet debilitating condition, would potentially lessen patients’ experiences of isolation and associated problems. Our introduction of an artist’s perspective into current gynaecological cancer treatment in Wales involved my engaging through dialogue with patients and medical professionals in order to generate a creative visual exploration of the existential ‘lived experience’ of vulval neoplasia.
Vulval neoplasia is a term used to define a diagnosis of both vulvar intraepithelial neoplasia (VIN), and carcinoma of the vulva – vulval cancer. It is a rare condition but it nevertheless accounts for 3-5% of gynaecological malignancies in the UK. Neoplasia literally means the abnormal proliferation of cells and, in the case of VIN there is the potential for the original infection to develop into cancer if left untreated. Clinical intervention is inevitably problematic given that the delicate nature of the specific anatomy makes even the smallest surgical procedure susceptible to post operative complications, and where the rate of recurrence of the infection is up to fifty percent, many patients undergo repeated surgery with inevitable impact on their physical and emotional quality of life. Psychosexual problems are, unsurprisingly, very common in this situation. In all gynaecological diseases, and particularly in vulval disease, diagnosis becomes a life sentence as the patient has to be monitored for the rest of her life whether or not an infection develops into cancer, but despite this, and due perhaps in part to what Jefferies defines as a general ‘paucity of literature’ that refers to this particular condition, there is in fact very little information available for patients with vulval disease in general. Moreover, where the intimate nature and the physical location of the condition makes it a very difficult subject to broach, women can be held hostage emotionally by social convention, and are often too embarrassed to speak openly about their symptoms, even with those closest to them. All these concerns contribute to the compelling and unfortunate fact that many women often suffer the symptoms of vulval neoplasia for a long time before seeking help. Suffering women often encounter themselves in a vulnerable situation where the difficulty in talking about their condition only exacerbates the fear and misunderstanding, and such feelings are made even more powerful when combined with a lack of knowledge and understanding about the condition both in society and even in the healthcare system. The idea that an inherent sense of ‘loneliness’ and isolation is an inescapable part of the experience of illness is certainly justified under these circumstances, but of course it is not a concept limited to the suffering caused by gynaecological disease any more than it is even a modern concept. As Charon points out, John Donne in Devotions on Emergent Occasions 1624 lyrically suggests that ‘As sicknesse is the greatest misery, so the greatest misery of sicknesse is solitude’ and in this sense, and where Sartre’s existential philosophy asserts that awareness and understanding of Self is realised in relation to the ‘other’, to feel alone is in many ways to lose a sense of Self, and thus to have no ‘voice’.
To be heard and understood is perhaps one of the most important factors in maintaining a sense of stability during a time of emotional uncertainty and Speaking the Unspeakable was an attempt to demonstrate that the creative process, in generating drawings that manifest my own experience and response as an artist to the experiences of illness related to me, produces forms and appearances that invite conversation and comment in ways that existing medical representations do not. The process itself then, based on original interaction, invites the viewer to engage with the completed works in a way that promotes a profound and meaningful understanding of the patient’s situation, and this is where creative practice, manifest in a ‘visual extension’ of narrative medicine, becomes itself a form of language that can bring an illness that has been stigmatised and hidden behind social mores into the light of public awareness and acceptability by daring to give it a ‘voice’.
Work generated as part of the Speaking the Unspeakable study was put on public exhibition at the Senedd Welsh Assembly Building in Cardiff in November 2012. Some patients managed to attend the opening night along with medical professionals, artists, politicians and the general public. The patients brought their families and spoke both to them and others about their experience of their illness – sometimes for the first time. There were three different types of feedback format available at the exhibition: a public comment book, a comment box where guests could leave private notes, and a sketchbook. All the feedback was documented and has itself become source data for ongoing work.
In conclusion, I want to say that the ‘art-science’ path is of course well trodden, but through Speaking the Unspeakable, and the ongoing Drawing Women’s Cancer project as a whole, we might hopefully leave some new footprints that will lead to a greater general awareness and understanding of cancer, not just in the objective sense as a disease that must be treated, but also in the profoundly subjective intuition of the sufferer’s ‘lived’ experience. It is such awareness and understanding that gives rise to empathy over sympathy and this in itself is, I believe, a paradigm for change. In bringing people together and providing a common language, I hope that Speaking the Unspeakable will begin the conversation.
I would like to finish this post with a selection of the comments we received at the exhibition.
Remarkable, truly extraordinary work. Well done Assembly for displaying it.
As a clinician reminds you that there is a person behind the diagnosis
Science art and suffering meet here. Thank you
Beautiful and necessary
As a friend and daughter of cancer sufferers the work is nothing short of perfect. The process of understanding the science of the diseases and having to watch someone you love battle it is horrendous. More than this, or should I say worse, is trying to help and explain to those who don’t understand or can’t see/won’t listen to what the people you love are going through. The art explains it all.
The work speaks and captures movement through emotion, pain, healing and beauty
It’s important to be reminded as a healthcare professional of the psycho-sexual impact the disease you manage has on the patient… I will factor this aspect of‘impact’ into my consultations in the future.
Great example of bringing people together and providing a common language