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Maddy Warren, Quanta Patient Advocate and Home Haemodialysis Patient

Maddy Warren, Quanta Patient Advocate and Home Haemodialysis Patient

“So now you have had your dialysis treatment are you better?”

“You don’t look ill”

“Why can’t you just skip your dialysis so you can come away with us?”

There is a widely held sense of frustration within the kidney community about the breadth of misunderstanding and misconception around kidney disease. For a condition that is incurable and worryingly on the increase worldwide, awareness is remarkably low. In the UK alone, approximately 3 million people have Chronic Kidney Disease (CKD) and a further 1 million are believed to be undiagnosed as symptoms often don’t appear until very late stages before the kidneys fail completely. More people now die of CKD than certain types of cancer.

From the point of view of public health, this is an obvious challenge as people don’t realise how important it is that they take care of and protect their kidneys, especially those with pre-existing conditions such as diabetes or high blood pressure. But for people already affected by CKD, who live on dialysis or with a transplant, every day can be a fight to be understood by family, friends, employers, teachers, the welfare system and even the healthcare system itself. Being told you look really well is a double edged sword when you are in fact immersed in a constant juggling act, handling a life limiting condition and an array of symptoms in a body that you cannot trust or rely on to keep you alive without intervention.

In my two decades so far on dialysis, an era which has also been also filled with advocacy, campaigning and agitating, I have reached the conclusion that telling a story enriched with humanity and emotion is by far the most powerful way to convey a message that your listener will both care about and remember. My belief is that by telling the engaging, thought provoking and deeply personal stories of people who live with kidney disease we can not only seek to improve broad awareness but also create a greater sense of shared experience within our own community, whilst perhaps also opening the eyes of those around us including those providing our care.

From this belief, and with a sense that a fresh perspective was needed, the idea for creating an exhibition was born out of a conversation in early 2019 between myself and Richard Booth, Creative Director and Photographer. My passion for writing and interest in the power of storytelling to inspire and influence, aligns serendipitously with Richard's work creating engaging images intended to challenge perceptions and invoke emotion in the viewer. After all, a picture paints a thousand words.

Following that well-worn path of pursuing great ideas that are seeded in the pub, we decided that our vague thoughts on this idea deserved attention - or in Richard's words we suddenly one day said "let’s just do this". We had no funding, no participants and no spare time from running our respective businesses. Looming summer plans included an epic coast to coast cycle ride (Richard) and training for the National Skydiving Championships along with walking 90 miles of the Thames Path (me). However, our enthusiasm got the better of any doubts about the practicalities and Survivors: Life Unfiltered was born. 

We wanted to portray the strength, vulnerability and resilience of those who are affected by CKD, shining a light on some of the challenges they face as well as sharing powerful human stories that offer a unique perspective on the world. From Richard's point of view, he was also just learning about CKD and it surprised him how many hidden sides there are to this invisible condition, with significant mental health implications as well as the huge amounts of time that people have to pour into keeping themselves alive. Even if a transplant frees somebody from dialysis it is still just another treatment not a cure, and it can be far from the magic fix that people expect. 

“My priority above everything else is that I have a life and I’m not controlled by my condition. I constantly question my care and make sure that I am central to any decisions being made, I know my own body and my treatment better than anyone. Dialysis isn’t the end of the world - you need to become an expert, assert your own wishes and find the right option that works for you, but it doesn’t have to be a life sentence”

Brett Dowds, Survivors participant, on long term home dialysis.

We had an amazing response to our search for participants with over 80 kidney patients and their families coming forward. We wanted to include people from all walks of life, since kidney disease does not discriminate, and our final group ranged from age 2 to 78 years old. We have dancers, designers, teachers, parents, campaigners, artists, an ex-England professional footballer and many more. A full UK tour followed to photograph each in their own environment, sharing their outward facing daily lives and passions.

By contrasting each image with a second much starker studio shot, we are seeking to show the side that the world sees, juxtaposed with the less visible but significant burden and reality of living with this condition. The images are displayed as diptychs and we also have a collection of powerful, emotional video interviews. The stories are all unique, covering topics as diverse as facing mortality, mental health, body image, gratitude, survivor’s guilt, silver linings, reconciling with a “new” normal and finding hope.

We are very grateful to Quanta as well as Kidney Care UK and Kidney Research UK for embracing the potential of this project as sponsors. As with everything during COVID-19 times we have had to be inventive, reimagining Survivors as an online 3D exhibition for now until we can revisit our national tour plans in 2021. The advantage is that whilst the exhibition is online it’s open for everybody in the world to see – please visit at www.survivorslifeunfiltered.co.uk and let us know what you think.

 

Maddy Warren

Quanta Patient Advocate

@queenofdialysis (Instagram, Twitter)

@survivorslifeunfiltered (Instagram)