Seeing the invisible experience of MS

Caitilin Punshon
Summary 
Seeing MS is an innovative project that launched in 2014. It aims to make visible some of the hidden symptoms of multiple sclerosis (MS). Around 20,000 Australians live with MS. It affects the central nervous system. Many of its symptoms are invisible. Through this project, nine photographs were created. Each one shows a particular symptom. An app was also developed. It allows people to put special filters onto their photographs to show what it is like to have MS. This project has had many positive outcomes. People with MS say it’s easier now to explain their experience of the illness.
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Caitilin Punshon on 19/02/2015
Pink flowers, one of which is on fire.
The MS campaign

They are burning.

The photograph shows a bunch of vivid pink flowers set against a dark background. These blooms are beautiful, vibrant, but something is wrong. The ones over to the left hand side are bathed in rising flames. They are burning. Their edges glow with bright points of orange light. The image is so striking that you can almost catch the scent of smoke. You can imagine the sound of rustling as the flowers slowly smolder.

An innovative project

This extraordinary photograph is part of the Seeing MS project. As its name suggests, the project aims to make visible some of the hidden symptoms of multiple sclerosis (MS). Around 20,000 Australians live with MS. It is a disease which affects the central nervous system, including the brain, spinal cord and optic nerve. Many symptoms of MS are invisible and can be very distressing for those who experience them. They are also immensely difficult to explain to anyone else. That’s where Seeing MS can help.

The project originated in 2014 by Lyn Petruccelli, who lives with MS. Nine photographers were each paired with a person who has MS. These people described a particular symptom of their illness to the photographer, who then created an image depicting that symptom. The images appeared in print and television advertisements. They can now be found on the Seeing MS website.

Seeing the hidden symptoms

The symptoms shown in the Seeing MS photographs are dizziness, numbness, spasticity, pain, loss of balance, blurred vision, brain fog, changes in body temperature and fatigue. Some photographs feature the person experiencing the symptom. This includes the one for spasticity. In it, comedian Tim Ferguson stands with his hands resting on his cane. Strewn around his feet are numerous, treacherous banana peels. The implication is clear. One step in any direction could cause a fall.

Other photographs, like the one of the burning flowers, do not feature the person involved. That image portrays the experience of pain. It was inspired by one of the symptoms faced by MS Australia Ambassador Stephen Papadopoulus. In a statement beneath the photograph, he says simply: “I am burnt alive every day.”

A better sense of MS

The Seeing MS project also involved the development of an app. This allows people to share their own photographs showing symptoms of MS. The app has different filters for each of the featured symptoms. These alter the photos, giving viewers a visual sense of how it feels to live with the illness. The Seeing MS app has been downloaded over 10,000 times and many people have uploaded images to an online gallery.

This innovative project has had many positive outcomes. It has raised funds and increased awareness about MS. Most importantly, it has given many people a better sense of what life with MS is like. It’s possible that a similar approach could be used with other poorly understood conditions.

A useful starting point

The great strength of the Seeing MS project is its focus on visibility. This potentially limits the extent to which people with visual impairments may engage with the message being conveyed. Nevertheless, it may still provide a useful starting point for a conversation. As Lyn Petruccelli says, “How we feel is there. You can see it. I can explain it. It’s fantastic.”

To view the images, explore the stories and download the Seeing MS app, go to www.seeingms.com.

 

 

Readers comments (4)

The website with its pictures is worth a look - the dizzy photo certainly evokes dizziness. Just looking at the nine photos gives me a better understanding of what it is like to have MS.

I agree, Graham. I learned more about life with MS through the photos and accompanying videos. It's such an effective way to communicate an elusive experience.

I have burnt my foot with boiling water. The pain of burning every day as I heal has been a nightmare. I feel so sorry for anyone who has M.S, if they feel this kind burning in their bodies and they can,t get better how do they cope. Painkillers are God send but even then it only takes edge of the pain. You feel like you are holding your breath so it just won't hurt but it doesn't work and it goes on burning. Life is so unfair for some. I may wake up one morning and the nightmare will be over but for others like my son,s best mate it continues. Please find a curer for M.S, Regards Nanette.

Thank you for your comment, Nanette. Often, it is not until we experience an illness or injury such as yours that we have a glimpse of what life might be like for other people. My hope is that through such experiences, as well as through the kind of writing you find on this website and the sort of art that has been created by the Seeing MS project, we can all develop greater understanding and empathy. I wish you well in your recovery.

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