IDIOPATHIC INTRACRANIAL HYPERTENSION (IIH)
Idiopathic Intracranial Hypertension (IIH) is a rare brain condition with no known cause or cure, affecting predominantly women aged 25-35 (90% women) the condition affects the body by producing too much spinal fluid, causing pressure to build up around the brain causing one of the symptoms, migraines.
The symptom that leads to getting diagnosed is usually noticed in high street opticians using Ocular Coherence Tomography (OCT) machine technology which uses lightwaves to take images of the backs of the eyes. This symptom is called papilloedema (optic nerve swelling) which is caused by the build-up of pressure and gives the individual pain behind the eyes.
The diagnostic procedures, after papilloedema is recognised, are extremely traumatic, including a series of visual tests, an MRI scan of the brain, and a lumbar puncture, which determines the IIH diagnosis.
There are many invisible symptoms that come with IIH such as:
-
Headaches/disabling migraines.
-
Pulsatile Tinnitus (pulsing & whooshing in the ears)
-
Temporary blindness.
-
Double vision.
-
Neck and shoulder pain.
-
Peripheral (side) vision loss.
and because it is a rare condition it is not known by many medical professionals, especially General Practitioners, sometimes even neurologists are unsure of what the condition is.
Monsoon was diagnosed with IIH in 2018 and spent a year and a half trying to navigate a rare condition with very little help, empathy and general understanding. The lack of care for mental health during this time halted Monsoon's life completely where she was left to deal with it on her own and was told by a neurologist to 'hang in there'. Monsoon began working with the IIHUK Charity and through lockdown began a series of surveys to collect experiences and descriptive data on how each person experienced their symptoms, this was part of her residency at System Modeling & Quantitive Biomedicine at the University of Birmingham. This work has fuelled a large exploration of the condition and people's experiences with medical professionals as well as the invisible symptoms themselves, monsoon is planning her first solo show in 2024 which will consist of works explaining IIH symptoms and chronic illness.
Monsoon began her exploration of IIH by illustrating the symptoms she was facing at the time of her diagnosis. These drawings became a map of IIH and have been reproduced using the cyanotype process. Illustrating is a starting point for Monsoon's projects and continues to appear throughout her exploration as a way of visually communicating ideas that are developing to a larger scale.
The images below are the first stages of visualising migraines and pulsatile tinnitus, with plans to develop into a interactive installation using sounds, electronic art and sculpture.
"A neurologist once told me 'if you don't stop eating you will go blind' and I thought to myself, 'what a dangerous thing to say to a patient', you're essentially telling someone to stop eating. The lack of care and understanding made me realise I had to stop relying on doctors and take this condition into my own hands, I consumed myself with research and read every paper ever written and realised that everything I was being told by doctors wasn't correct and had more information and reasons behind it".
Images of the artist experiencing migraine attacks.
"I joined IIHUK support groups online and saw hundreds of women writing their stories, and they were all the same as mine, this fueled me to want to make a change and difference, I began working on ideas to communicate chronic illness and invisible symptoms to people who don't suffer from IIH, including doctors. I began a residency with the lead neurologist and ophthalmologist in the UK on IIH and collaborated with the IIHUK community on how they experience each symptom..."
Plan of IIH symptom installation
OBESITY STIGMA
Obesity stigma is a serious problem in society that is focused on women and affects women attempting to receive healthcare. The unhealthy beauty standards of the world today have a catastrophic effect on young people and contribute to suicide rates and eating disorders. Monsoon has experienced first-hand the effects of this bias whilst growing up, as well as throughout her diagnosis of IIH. This has driven another side to the project by highlighting these issues and celebrating all body types through visual art.
Images of works made in collaboration with IIHUK community & Palm Bay Primary School.
ARTS REP FOR IIHUK CHARITY
Monsoon was appointed as Arts and Culture Representative for IIHUK in 2020 after extensive work to raise awareness and fundraise for the charity. Monsoon is currently working with IIHUK's Lead Researcher Amanda Denton on a paper about Obesity Stigma and is incorporating her artworks to inform medical professionals about the ways in which patients want to be spoken to and what help they would benefit from. Amanda conducted a survey to over 600 people in the IIH community who were asked questions about their treatment by doctors, a word cloud was made from the responses to one of the questions:
How did being advised to lose weight make you feel?
Monsoon and Denton will be working together for a conference in June 2022 to visualise the findings from the survey which was conducted in lockdown 2020. 86% of participants believe that being overweight is the reason why IIH occurred, but there is no known cause or cure. Weight management has been proven to stabilise the condition but not cure it completely.
"Doctors tend to take you by your appearance and gender, if you come into an appointment with a cough, you will be told to lose weight, if you come in as a woman with a rare condition and your BMI is higher than average, you will not be taken seriously because of this. I have always been higher than average with my body type, but that doesn't mean I can't have the same care as other people with an average BMI."
EXHIBITIONS & COLLABORATIONS
PRESS + PLAY // PHEONIX ART SPACE, BRIGHTON, NOVEMBER 2021
Monsoon exhibited Predicting Papilloedema for the first time after lockdowns in the UK in November 2021. PRESS + PLAY was a group show of printmakers from across the UK and Monsoon was the only printmaker using the Cyanotype process. The prints are made using digital negatives of MRI scans of the artist's brain and OCT images of the back of the eyes. Details on the project here.
RARE DISEASE UK, 2022
Monsoon worked with Rare Disease UK in February 2022 to create a video sharing a letter to her younger self, before her diagnosis, in hope that other people suffering will know that you can still live a life after a diagnosis.
HOPEPUNK EXHIBITION, LBT SHOWROOMS, COVENTRY, APRIL 2022
Monsoon was invited by HOPE charity to exhibit Predicting Papilloedema for a groundbreaking group exhibition in Coventry where 42 artists with lived experiences of invisible illness came together to share their experiences through the arts. More on HOPEPUNK here.
.jpg)
