International Women’s Day provides a worldwide focus on gender disparity. But also gives us a day to celebrate the contribution of all women and to acknowledge the challenges faced by many.
For more than 17,000 women living in Australia that challenge is Multiple Sclerosis.
Multiple Sclerosis (MS) is three times more likely to visit women than men.
And if it does, it tends to strike women between the age of 20 and 30, a time in their life when they should be focusing on careers, travel, maybe starting a family. But for women diagnosed with MS, the focus shifts to include the impact of living with MS.
It’s a disease which affects everyone differently. Some people feel like they are on fire. Some lose their balance and depth perception where others lose control of their bodily functions. And the extreme fatigue can be devastating.
For everyone diagnosed with MS it is life changing.
In a world where women are so often the victims of harassment, abuse, unequal pay, unequal opportunity, gender bias and the list goes on, try being 25, female and adding MS into the mix. It’s tough.
Which is why on International Women’s Day the MS community asks the Government to add the urgent need for beating this disease to the list of needs facing modern women.
The truth is bittersweet. We do not yet fully know the cause nor have the cure but the science tells us that beating MS is within the grasp of this generation. This generation of scientists and this generation of political leaders. That’s the sweetness which hope brings. We want to stop this disease and perhaps in the meantime see improvements in how the day to day can be managed.
But the bitterness is in the uncertainty at how long this could actually take, coupled with the realities of living with MS.
MS is a disease which if we manage better, and ultimately stop, unleashes the full economic potential of women and men both living with MS.
Often, staying employed with MS is an ongoing juggle of managing symptoms and lifestyle changes, so consider the stories of these three women impacted by the ‘invisible’ symptoms of MS.
Overwhelming fatigue, due to her MS, left 26 year old Vicki unable to continue in full time employment, while Marnie, 38, found the issues and embarrassment associated with her incontinence just made it too hard to continue to work at all. And 34 year old Sophie found that MS related heat intolerance made it impossible to continue the work she loved as a gardener.
That’s why funding for beating MS is also an investment in a very large number of Australian workers who want to give more.
The solution is in the research. And in the funding which it is hoped the Commonwealth Government’s Medical Research Future Fund may provide.
So far, the MS Community’s applications for funding have been met with heartfelt and no doubt genuine expressions of empathy. Empathy however won’t beat MS. The feeling in the MS community is that Canberra has a view that the numbers of people with MS are not great enough to warrant the public investment necessary to beat the disease.
But this is a disease which we could possibly send to the dustbin of history. And the funding sought from the research arm of the MS community is small and proportionate given the per capita basis of decision making by the good willed ‘bean counters’.
On International Women’s Day 2018 we need to move closer to solving this for the women and men currently living with MS in Australia, as well as the 2.3 million people living with MS across the globe, but also for those that would be diagnosed in the future.
And think that just as our society needs to beat all of the inequality facing women, there is a largely unknown and especially cruel inequality for women living with MS.