Finding friendship on unsteady ground
Article from Winter 2019 edition of Intouch eNewsletter. 

When Karen and Justine crossed paths at an MS Ambassador training session five years ago, they had no idea of the powerful friendship that would ensue

BOTH were single mothers, and both were living with multiple sclerosis. Justine had relocated to Geelong from Western Australia and had recently started receiving support from the National Disability Insurance Scheme (NDIS), which was proving life changing.

Karen on the other hand, had been living with multiple sclerosis for 15 years and wasn’t an NDIS participant yet. Life for her at that time was not easy.

“I’d only ever met my grandmother, who had multiple sclerosis, once, and all I could remember was that she was in a wheelchair, she could barely see, and she was really grumpy. So, when I found out I had multiple sclerosis, I thought oh my god, I’m going to end up just like her,” Karen said.

Karen was newly married, living in America and pregnant with her second child when she was diagnosed with multiple sclerosis just shy of her 21st birthday. She had a young son, no family close by and was in an abusive relationship, so the early warning signs went unnoticed for close to four years.

“I used to run when I was younger, and my legs would tingle afterwards. I just thought I’d had a really good workout. I was also in a play and my speech became garbled – it was frustrating and embarrassing, but I put it down to being confused learning my lines. Then three days after I was married, I was driving my dad to the airport in Washington State and my vision went blurry. I now know they were all symptoms of multiple sclerosis,” Karen said. Justine’s diagnosis was even more prolonged, taking eight years from when her symptoms first appeared. “My vision started to go in 2002. It was like someone had smeared Vaseline over my eyes, but I put it down to the mascara and eyeliner I was wearing because it cleared up after a couple of months,” Justine said. “In 2007 I was competing in AllRound-Weightlifting and was off to the world championships in New Zealand when my left arm went all funny a couple of days before I was due to leave. I thought I’dstrained my bicep and was going to get it looked at when I got back, but by the time I got home it was gone and I never thought much more about it.”

During a visit to her GP in 2010, Justine mentioned her eyesight had become blurry again. More than eight months later, she found herself in a neurologist’s room faced with a multiple sclerosis diagnosis.

“It’s terrifying when you’re diagnosed for the fear of the unknown, if you don’t know much about it. But it’s also terrifying if you’ve had a loved one who’s been through it and you’ve seen what it can do at its worst,” Justine said. When Justine was nine-years-old, her mother was diagnosed with multiple sclerosis. She spent much of her young life caring for her and watched the disease ravage her mother’s body before she succumbed to complications and passed away in 1997.

While both women endure crippling fatigue, pain, poor vision, cognitive impairment and reduced mobility, which affects everything from simple tasks like cooking a meal to driving a car, their passion for life and sense of humour is as strong as their friendship.

“There’s hilarious things I can tell you from a women’s perspective about having multiple sclerosis, like going to get your legs waxed and almost kicking thewaxer in the face because of the nerves in your legs,” Karen said.

Without the MS Ambassador program, Karen and Justine wouldn’t have formed the bond that they have now. We know that coming together with other people living with multiple sclerosis can be a really important part of navigating the disease, which is why we offer the MS Peer Support Program. The program comes in many different forms, but works for the same reason. To connect people.

If you’d like to learn more about the MS Peer Support Program, or how we can help you navigate the NDIS, give us a call on 1800 042 138 or visit www.ms.org.au.

The MS Peer Support Program will continue to be available in online formats only, to avoid the spread and exposure of coronavirus (COVID-10) until further notice. 

Article originally written and published by the National Disability Insurance Agency (NDIA).