Mellissa Fisher - Kent
ARTIST
HOPE PROGRAMME FOR IDIOPATHIC INTRACRANIAL HYPERTENSION
I have been a practicing artist for 10 years working in collaboration with scientists and producing visual art that communicates science. Previous works include working with living bacteria, fungi, slime mould and since 2019 I have been working on invisible symptoms of chronic illness.
I was diagnosed with Idiopathic Intracranial Hypertension (IIH) in 2018, IIH is a rare neurological condition that increases the amount of spinal fluid around the brain causing disabling migraines. This condition has no known cause or cure and predominantly affects women ages 25-35, although over recent years there have been more cases in men and children.
The lack of support in healthcare for rare conditions is incredibly frustrating and there are so many people not able to manage their IIH due to the lack of knowledge and care in place, there is also a stigma attached to the condition as a percentage of IIH sufferers are overweight which contributes to the lack of care. The condition has many invisible symptoms such as migraine, pulsatile tinnitus, papilloedema (optic nerve swelling) with visual disturbances, severe spine/back pain, and neck pain, which is hard to communicate with doctors, friends, and family.
When papilloedema is diagnosed the person will be sent to A&E for an MRI to eliminate a brain tumor and a Lumbar Puncture to measure the pressure of the spinal fluid and when the spinal fluid is high the diagnosis of IIH is determined. The whole diagnostic procedure is painful, invasive, and traumatic and people are left with little to no support to manage their IIH.
After 1 1/2 years of struggling with and not knowing how to manage my IIH, friends, and family not understanding or able to care for me, I was feeling alone, depressed, anxious, and helpless; this is when I found IIHUK Charity. There are online support groups with hundreds of women with the same story as mine, a friendly, dedicated & hardworking IIHUK charity team, and a website full of information on how to navigate through the life-changing diagnosis. The artworks I have made so far are about papilloedema, the symptom which causes pressure behind the eyes, headaches, and visual disturbances, and is the entry symptom to being diagnosed with IIH.
Before lockdown 2020, I was awarded an artist in residence with the Systems Modelling & Quantitative Biomedicine with the University of Birmingham and I worked closely with Mathematician Dr. Leandro Junges and the POP Study Group who were advancing image technology to be able to assist in the diagnosis of papilloedema.
Throughout lockdown 2020 I conducted a sensory survey to collect descriptive data from the IIH UK community, collecting stories and descriptions of each invisible symptom they suffer. Through these responses and my own experience, I created a series of 10 images using the cyanotype process which uses sunlight to create an image. An OCT machine makes images of the back of the eye with lightwaves, so I chose to use this process to represent producing images in a similar way to an OCT machine.
Moving forward with the work on invisible symptoms, I am now Arts & Culture Representative for IIHUK and I have dedicated my artistic practice to collaborating with the IIHUK community to produce visual art on each symptom, visualising research in science technology, and inspiring others to take control of their IIH.
