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Today is World MS Awareness day.
It’s not exactly a day to celebrate, but it is an occasion to reflect on the way Multiple Sclerosis changes peoples’ lives.
Vanessa Fanning knows from her own experience that many people choose not to disclose their diagnosis at work and sometimes not even to family and friends for many years.
She too buried her head in the sand when she received her diagnosis more than 20 years ago, having finally sought medical help for unexplained symptoms.
“At the time I just wanted to get on with my life. But when things get challenging, for example when suffering a relapse or experiencing a new symptom, that can feel frightening and lonely. It’s at these times that I realised that meeting informally with other People with MS (PwMS) can be reassuring, informative and constructive.”
A month ago, Vanessa took matters into her own hands and set up a Facebook group called Canberra Region MSers with a couple of MS mates. Already it seems to be meeting a need.
“We have 60 members just by word of mouth. I wanted to protect people’s privacy, so only members can see who else is a member and only members can read the posts. Our philosophy is all about living well with MS. We share information on interesting research and on anything that helps us take control of MS in our lives.”
MS is the most commonly diagnosed neurological condition among young people. It most often strikes in the prime of life between just 20-40 years old and there are now an increasing number of cases of Paediatric MS. While there are treatments that help, patients live with the fact that there is no cure.
There are now more than 25,600 Australians with MS and around 75 percent of these are women.
Vanessa said she hoped that World MS Day may ignite more community awareness surrounding the condition and bring more PwMS into contact with each other in her group.
“We post news on local in-person get-togethers as well as Zoom meetings. There’s also an art group, a mindfulness group and we regularly invite well-qualified speakers to present to us on topics of interest. Some of these activities take place at Gloria McKerrow House where the MS Society is located.”
The members of the group have learned valuable information from these peer-to-peer conversations.
“Basically, only PwMS get what it’s like to have MS. Most of us are experts on the condition, we understand the many unpleasant ways it manifests itself; we know what MS fatigue and neurological pain feels like and we’ve wrestled with the uncertainty. But many of us are also very up to date and well informed on the research, and able to share strategies for living well with MS.”
Vanessa could not overestimate the level of shock that most MS diagnoses caused.
“Because the disease manifests itself in so many different ways, (everyone’s MS is different) and because the severity and the prognosis are so unpredictable, the uncertainty can be very stressful.
“For me, the diagnosis had a significant impact on my sense of identity. It struck at the heart of who I thought I was. I lived on a rural property, I was a mad keen horse rider and breeder, I loved bush camping and overseas travel, I had a demanding career, I prided myself on being fit, strong and super-independent. Suddenly all that seemed to be in question.”
She noted that everyone diagnosed with MS needed to reassess decisions about relationships, work, career paths and having children.
“Of course, no-one wants to join the ‘MS Club’ but connecting with other people with MS can be a very positive experience. Everyone understands. To join us, find ‘Canberra Region MSers’ on Facebook. We love meeting new people, and we welcome new ideas.”