By Sharlene Brown, independent Board member and Chair of the National Advocacy Committee for MS Australia
This feature piece originally appeared in HerCanberra on Wednesday, 6 September, “Recalibrating goals after MS diagnosis”
As the Women’s Health Week shines a spotlight on our well-being, I share my story as both a National advocate for people living with a disability and chronic illness, and as a person living with multiple sclerosis (MS). As the independent Board member and Chair of the National Advocacy Committee for MS Australia, I have a first-hand experience which is shared by countless women across the country living with MS.
I was 29-years old, and just returned from the UK when MS made its unexpected entrance into my life. The diagnosis, while beyond frustrating, was the genesis of a unique journey that has helped to shape my identity and purpose in profound ways. As a woman, the impact of this chronic condition during pivotal moments in my life has been both incredibly daunting, and in retrospect, life changing.
I moved from Western Australia to Victoria to be closer to family, continued to work at the high level I had previously enjoyed, but naturally with a step back. I had to recalibrate what I wanted to achieve professionally and personally. I had to rethink this modern concept of success.
The next complexity was deciding to have a child and during a time when it was commonly known that post childbirth, MS can rear its head. In my case, I remained in remission, but was truly exhausted for the next five years.
Managing my MS diagnosis
In the 21 years since my MS diagnosis, I’ve learnt that managing health and well-being among the unpredictability of MS requires a multifaceted approach. I’ve learned to listen to my body, extracting myself from chronically stressful situations and surrounding myself with positivity whenever possible. Walking has become my personal antidote, which is arguably a reminder that small rituals can provide a feeling of choice over body and mind.
I found empowerment with knowledge and proactive decision making. In the first few years after my diagnosis and very active MS, I chose to adopt a predominantly plant-based diet which was, in itself, a transformative experience. That with the disease modifying medications assisted with the management of the MS. Irrespective of the change to MS symptoms, emotionally it felt good to be doing something that was beneficial for overall health and self-management.
The journey toward good health was no longer a passive experience; it was an active commitment that echoed my need to regain some control over my body.
Early MS detection
Early detection and regular health checks can be pivotal for MS. I was grateful for the early medical interventions and detections, and despite the roller-coaster of emotions and experiences it brought. I’ve been on a continual journey of seeking to be better informed and to advocate for those who cannot.
Through organisations like MS Australia, I’ve been able to tap into resources that have assisted with the empowerment of not just myself, but thousands of women in Australia.
Knowledge is power and being represented by a person living with MS and a woman is an incredibly important tool to evidence the power of unity.
MS is a mysterious and complex puzzle, yet despite all I’ve learnt about MS, the potential triggers and its individual impact on individuals, those living with it are impacted so very differently.
I’m frequently asked why MS incidence and risk is increasing disproportionately in women. It has long been recognised that MS is more common in women than men – in fact, three out of four people diagnosed with MS in Australia are women. And while it is pleasing to see research efforts revealing reasons why some people get MS and others don’t, there is still more research to be done to understand the link between women and MS, including research into the very important issues affecting women such as pregnancy, and menopause. We must not shy away from these issues and the role of women in this research and to advocate for it is integral to success.
The need to know more about the illness and my desire to advocate, is why I chose to serve as the independent MS Australia Board Member – and have the privilege of chairing MS Australia’s National Advocacy Committee.
I volunteer in vital MS research studies, and again the contribution provides a sense of personal ownership in the research outcomes, as well as hope and steps towards finding better treatments, prevention and cures for MS.
A journey of advocacy
As Jeans Hailes Women’s Health Week shifts the lens to women and encourages them to prioritise their well-being, my advice for others living with MS is to ask questions, advocate, and assess and listen to your body. Know that stress and over commitment don’t lead to great outcomes and accept that rest is an active path toward healing. The healthcare system can be complex, but your voice and unique needs deserve to be heard.
As a board member of MS Australia, I’ve been privileged to contribute to the advocacy that drives research and support. From wearing multiple hats to embracing my identity as a woman living with MS, I’ve discovered that strength and empowerment emerge not just from the absence of challenges, but from the ways we transcend them. As we gather during this Women’s Health Week, let us stand united in our stories, our resilience, and our shared journey toward better health and brighter tomorrows.
This week provides an excellent opportunity for the broader community to step up and support women with MS. I encourage the Australian community to learn more about what multiple sclerosis is and the challenges women face. While arming ourselves with greater understanding and empathy for women with MS, consider showing your support by encouraging policymakers to prioritise MS research and improve health services and support for women with MS.
MS Australia is a Community Partner of Jean Hailes for Women’s Health Week, 4 – 8 September. The Women’s Health Week 2023 theme is “Grow your knowledge” and is Australia’s largest event dedicated to the health and wellbeing of women, girls and gender-diverse people. The week’s focus is the importance of maintaining good health and wellbeing and is a timely reminder to everyone to make their health a priority.
