Inside Multiple Sclerosis, the invisible disease, and the SeeingMS Exhibition

IMAGINE what it’s like to live with a disease that has no cure, no treatment, and whose cause is unknown. That’s what it’s like for 23,000 Australians, who live with ‘invisible symptoms’ daily.

NO-ONE knows what causes Multiple Sclerosis. No-one knows how to treat it. No-one knows how to cure it.

The symptoms, like dizziness, numbness, blindness and constant pins and needles, are debilitating — but they’re also invisible. It truly is one of the mysteries of the medical world, so it’s staggering to know that four Australians are diagnosed with MS every day, and most of them are under thirty.

“I was 22 when I was diagnosed, but my symptoms started at 16,” Stephen Papadopoulos told news.com.au as part of the SeeingMS Campaign, which seeks to explain some of the invisible symptoms associated with Multiple Sclerosis.

“My first symptoms were blurry eyes, then constant pins and needles. I started a chef’s apprenticeship around the time my speech started to slur, so I was accused of being drunk all the time. I left that job after two years to pursue photo journalism, but soon after that my eyesight started deteriorating.

“The hardest thing for me was that a lot of my symptoms were invisible — it makes you question your sanity. So for me, it was a relief to actually be diagnosed with MS. It was six years of pain and frustration before that. To actually have a name for what was going on in my body was a relief.”

MS is a disease of the central nervous system which interferes with nerve impulses within the brain, spinal cord and optic nerves. It is characterised by ‘sclerosis’ — a Greek word meaning scars. These scars occur within the central nervous system and depending on where they develop, manifest into various symptoms. Some people are minimally affected by the disease, but for others the impact is more severe and results in swift progress towards disability.

For Papadopoulos, who is now 35 and working as an MS Ambassador for MS Australia, his symptoms are unpredictable, and he has to deal with burning pain daily.

“One time when I woke up when I was 30, I couldn’t walk. I couldn’t walk for 5 weeks,” he tells news.com.au.

“But as for constant symptoms, I have sharp stabbing pains at the moment in my legs, but where the stabbing pain strikes always changes. It’s the same with the arms. I need to move around a lot, I have slightly less pain if I’m moving. So I rock a lot, its soothing, like what you’d do to baby.

“I also have a burning sensation over my entire body, so that pain is 24-7. Honestly, it’s like I’m being burnt alive every day. Because I’m in so much pain it’s difficult to sleep — I got only 2 hours last night.

“Showering, wearing clothes, shaking hands — it brings me immense pain, but I can’t not do those things. It’s not living a life if you don’t have any human contact. It is hard to be intimate with someone because it does cause pain, and spooning with me is not fun — I toss and turn a lot. So I’m single, single, single. But I like having to just look after myself. It’s one less thing I have to worry about,” he says.

Like Papadopoulos, being diagnosed with MS was somewhat of a relief for 29-year-old Adriana Grasso.

“I was 26 at the time, and I’d lost all feeling in my body, but I’d get periodic electric shocks. At the time I took it really badly, and I slipped into depression. So when I was diagnosed, initially I was relieved because I had so many unknown symptoms. It was a relief to know what was wrong. But then I was scared because I didn’t know a lot about MS — the only thing I knew was that you could end up in a wheelchair. But MS affects everyone differently, and for me, that doesn’t look like it will be the case.

“I work as an accountant part time, my boss is unbelievable. Stress agitates my symptoms, and so he’s created a stress free environment that allows me to do what I can manage. I try to maintain a stress free environment in all aspects of my life, I exercise every day, I focus on healthy eating. Most of my symptoms did go away, but I still have no feeling in my hands, and the sensation of touch has been lost completely.

“I can feel the pressure of touch, but I don’t know what things feel like anymore. What hair feels like, what the wall feels like, things like that. I have to be extremely careful with hot water, even glass, because you don’t know how firmly you’re holding it and it can easily shatter. And even paper is tricky! Fruit and vegetable plastic bags at supermarkets as well. I had to retrain my hands,” she says.

Ms Grasso comes from a tight knit community in Shepparton, who have helped her raise hundreds of thousands of dollars for MS research. For last year’s MS Walk + Fun Run, she was the highest fundraiser, raising $150,000. But despite community, workplace and family support, the disease is still a difficult one to articulate.

“There are so many unknowns,” she says. “And for me, you can’t see that I can’t feel, just by looking at me.”

“Mum and dad often forget I have MS because I look so normal,” adds Papadopoulos. “They only really remember when I gave to go get injections or go see my neurologist. Same with my friends. One of my friends the other day said he totally forgot I had MS.”

Something that seeks to make these ‘invisible symptoms’ easier to explain for people like Papadopoulos and Grasso is an innovative campaign called SeeingMS.

“I think its brilliant,” Papadopoulos says of the photographic campaign launching today, to coincide with World MS Day. The campaign features nine Australians living with MS, who were partnered with nine photographers to expose nine invisible symptoms of MS.

“I mean, it’s trying to expose invisible symptoms, symptoms that are even hard to articulate. If you see someone in a wheelchair you assume there’s something wrong with them. But how can you see fatigue? How can you see dizziness? How can you see pain? It’s hard to fathom.”

Alongside the SeeingMS campaign, which you can see as a physical exhibit in Alexandria, NSW from today, the MS Society have launched a website and an app for Apple and Android, which manipulates photos to reveal nine invisible symptoms of MS.

“The fact that there’s a phone app as well is great,” says Papadopoulos. “It means you can see dizziness, pain, blurry vision, all those things you don’t see unless you have MS.”

The SeeingMS Exhibition runs from May 28 to June 6 at SunStudios in Alexandria NSW. To see more digital pictures, visit www.seeingms.com. To donate to MS research, visit the MS Australia website at www.msaustralia.org.au/donate