SENSE OF SYMPTOMS
Sense of Symptoms was Mellissa Monsoon's most recent exhibition at Phoenix Arts Space in October 2023. It explored the impact and experience of tinnitus as an invisible symptom that affects millions of people in the UK.
Expanding on Monsoon’s previous work on the impact of the invisible, Sense of Symptoms is an interactive installation that provides visitors with a journey through invisible symptoms. As visitors proceed through the journey of Sense of Symptoms installation, they gain an understanding of pulsatile tinnitus by experiencing the sounds that are part of the daily lives of 1 in 10 people.
The exhibition has been made in collaboration with people who experience Idiopathic Intracranial Hypertension (IIH), a build-up of pressure around the brain causing a variety of symptoms, like pulsatile tinnitus and many other symptoms. Idiopathic Intracranial Hypertension IIH appears invisible to the onlooker but can have a marked impact on those who live with it. Inspired by her recent work with the charity IIH UK.
“Invisible health conditions impact millions in our society and considerably affect people in their daily lives; the fact that they are invisible means that they need to be all the more broadly discussed in public. My work explores these experiences from an aesthetic perspective, using a broad variety of lenses to visualise and realise experience as fully as possible: cyanotype prints, lino prints, ceramics, sculpture, and electronic art”. - Mellissa Monsoon
‘The idea for this exhibition came from an interaction with my wife; I was suffering really badly from Pulsatile Tinnitus with a constant whooshing, rhythmic sound in my ear which was so loud it was stopping me from focusing and sleeping. I asked my wife to press her ear against mine as I was convinced she could hear what I was hearing, but she couldn’t, and that devastated me…’
Interactive elements of the exhibition were signposted with ear shaped sculptures, where exhibition visitors were invited to position their ear next to the artwork to hear sounds of tinnitus, sounds that soothe tinnitus and responses from the IIH UK community.
Sounds of pulsatile tinnitus were collected by the Pulsatile Tinnitus Clinic and RADIS Lab at St. Michael’s Hospital, Toronto, and the Biomedical Simulation Lab at the University of Toronto. (RADIS = Robotics, AI, Dynamic flow, Imaging and Simulation, in case you’re wondering; that’s the clinician’s research lab).
When I was diagnosed with this condition, I felt isolated and alone. A neurologist told me that I might go blind, and hearing those words sent me into shock, anxiety and deep depression for over a year. I was given very little support from doctors; most GPs responded to my diagnosis by saying, ‘I’ve never heard of that condition’, which filled me with even more depression and anxiety. When I realised doctors didn’t want to learn about this condition, I took matters into my own hands; I learnt everything I could about IIH and began creating art about each symptom. I learnt how to manage this condition through my art practice. My motivation for creating the work was to give people a voice and raise awareness of a condition that is heavily stigmatised.
PREDICTING PAPILLOEDEMA
“I had headaches for 2 weeks and visual disturbances, I didn’t think much of it, I just thought I needed stronger glasses. I got my eyesight checked out; they told me to go to A&E immediately as my optic nerves were so swollen that it could be a brain tumour….”
- Mellissa Monsoon
Predicting Papilloedema is a project focused on Artificial Intelligence (AI) & Ocular Coherence Tomography (OCT) machines. Papilloedema is an invisible symptom of IIH, which can cause vision loss if not treated. This symptom can be picked up by your high street optician and can be a sign of a more severe condition.
In collaboration with the POP study group from the University of Birmingham’s Systems Modelling & Qualitative Biomedicine (SMQB) research group, Mellissa worked closely with mathematician Dr Leandro Junges and Dr. Wes Woldman on a project exploring how AI can assist clinicians in diagnosing a symptom like papilloedema. Mellissa worked closely with neurologist and ophthalmologist Professor Susan Mollen & Professor Alex Sinclair, who are leading research for IIH by working with artificial intelligence (AI) in technology to aid diagnosis of Papilloedema and find less invasive procedures to diagnose this invisible condition.
ADIPO
Adipo is an artwork made by casting parts of the human figure which are underrepresented and less desired in media and society. For this artwork, Monsoon conducted a survey with the IIHUK charity community, where questions were asked regarding how the body should be described by medical professionals, friends and family, and society. Answers show that the community needs understanding, empathy, and encouragement instead of the shame and neglect that often come from obesity stigma.
Research into the condition has shown a correlation between being overweight and having IIH. Due to this correlation, general practitioners, in particular, often ascribe obesity as the cause of IIH, inadvertently shaming individuals who are seeking help. Evidence shows that there are numerous possible causes, including hormone imbalance (relating to polycystic ovarian syndrome, PCOS), blood clots, and weather and climactic changes.
The word Idiopathic means ‘cause unknown’.
There is no known cause or cure for IIH; often, women are left helpless due to the stigma attached to the condition. New research at the University of Birmingham has been attempting to determine the cause. Most recently, the lead neurologists and ophthalmologists in the UK, Professor Alex Sinclair and Professor Susan Mollan, have received funding from NASA to investigate further, as astronauts often develop the condition after space travel.
SIDE EFFECTS
“I would get excruciating pins and needles all over my body; breathlessness walking anywhere; my hair was falling out; and I was depressed & anxious because I thought I was experiencing symptoms of IIH. I stopped taking the medication and realised all the symptoms were side effects and that I’d been misinformed about what the medication can do to your body and mind… The second type of medication I was prescribed came with a verbal warning: ‘These will probably give you kidney stones; drink plenty...’. I stopped taking medication altogether and went into remission 6 months later.” - Mellissa Monsoon
When diagnosed with IIH, you are given medication like Acetamolozide (Diamox) or Topiromate, which are used to decrease the spinal fluid in your body, reducing the number of migraines. However, the side effects that come with these medications are often not communicated by GPs, so patients often confuse the side effects of the medication to be symptoms of IIH. People with IIH have created the hashtag #devilmox because of the severe side effects.
This artwork shows porcelain pills and fragments of a pillbox with descriptions of each side effect experienced by an individual taking these medicines.
DUTY OF CARE
“Doctors have shamed me for being overweight my whole life, I have been made to feel that this condition was all my fault when really, medical professionals don’t know how it develops; idiopathic means ‘no known cause’. A neurologist told me, ‘If you don’t stop eating, you will go blind.’ I felt suicidal after this appointment and needed to take someone with me to appointments as I felt too vulnerable to be there on my own. Sadly, my experience is common with the IIH community.”
-Mellissa Monsoon
How has the stigma of obesity affected your access to healthcare?
Duty of Care is an artwork inviting the public to hear responses from the IIHUK community. Monsoon invites you to hold your ear up to a belly button to hear those responses on how obesity stigma affects access to healthcare.
Thanks to:
