By Natalie Walsh
Tuesday March 8, International Women’s Day celebrates the global theme #BreaktheBias – a gender-equal world free of bias, stereotypes and discrimination, a diverse, equitable and inclusive world where difference is valued and celebrated. Among the Day’s suite of missions, ‘(Women’s) Health’ and ‘(Women at) Work’ remain significant MS Australia advocacy issues on its important change agenda.
2022 is MS Australia’s 50th anniversary year, recognising 50 years of progress. The organisation has been part of my life for almost 20 years, through MS Research Australia, as an MS Australia National Advocate and a woman living with multiple sclerosis (MS). Coincidentally I am also 50 this year which has a nice synergy.
MS Australia supports the #BreakTheBias campaign because, whether deliberate or unconscious, bias makes it difficult for women, including those with MS, to move ahead. Action and understanding are needed to level the playing field.
I am particularly passionate about the International Women’s Day mission to forge inclusive work cultures in which women thrive in their careers, their achievements celebrated.
Reflecting on the past 50 years and the advances in paid work and conditions for women while encouraging, more is still needed. Particularly for those living with MS. Ironically, the pandemic enabled many women with MS to work from home and reduce travel time, therefore lessening the impact of fatigue (a common symptom of MS). I yearn for the day when all employers appreciate and understand the benefits of a diverse workforce, including people living with a chronic condition and/or disability and note MS Australia will focus on Employment and MS for World MS Day 2022 on May 30.
50 Years | Women with MS
Since my tentative, gradual foray into the world of MS, I have met and come to admire so many amazing people.
With three out of four people living with MS being female, I can’t help but reflect on the last 50 years and Australian trailblazers with the disease, including the late Olympian Betty Cuthbert and singer Chrissy Amphlett. High-profile US actors Selma Blair and Christina Applegate have shone a bright light on living with MS. Three Australian athletes with MS had great success at the Tokyo 2020 Paralympic Games: Janine Watson, Carole Cooke AM and Emily Petricola OAM.
I know many successful people living with MS who may not be household names but are equally inspiring, such as Peer Support Group coordinators, who nurture and bring people together nationwide. Also, the wonderful women who have advocated for personal, local issues, that ultimately help others too, such as:
- Accessible pathways to take their children to school or access the public pool
- Better housing options for all Australians
- Changing careers to suit a new lifestyle – one that accommodates and embraces living with MS
- Workplaces that embrace disability and celebrate difference and diversity.
Tough gains by brilliant women who wanted to enact change and have helped so many along the way!
A baby and an MS diagnosis
I was diagnosed with MS at 33, was a single mother of my then 8-month-old son and have been committed to MS research ever since. Fifty years ago, when there was only steroid treatment available, my doctor would have likely said, “you’re exhausted, go home, rest and ‘have a Bex’.” The first sign for me was a flickering peripheral vision in my right eye and fortunately, my mother insisted I visit an optometrist. I had also been more tired than ever, but my beautiful boy was not much of a sleeper, and I would stay up late tidying the house, paying bills, looking after our life. After examining my eyes, my optometrist sent me directly to an ophthalmologist, who arranged for urgent scans, and I was immediately referred to a neurologist.
Upon being told I had MS, I didn’t ‘hear’ anything. My mother was in the neurologist’s waiting room with my son. While I could hear his beautiful sounds entertaining others on the other side of the neurologist’s door, my life had stopped. She told me things I did not want to hear, and all I could think of was my baby and what would our life be going forward?
I recall the neurologist saying research had found that people commencing treatment as soon as possible had the best long-term results. And that in ten years, oral treatment would be available, but at that time (2005), the only medication was via a needle (I used to break out in a sweat at the thought), but due to my lifestyle, she recommended a daily injection. I didn’t have ten years to wait for what I didn’t know would happen. I had to keep as well as possible: I had my son to raise and my life to keep living.
Some wonderful friends wanted to do something to help. I was one of four other female friends of the same age, children the same age, when MS came along and completely shook our collective worlds. Over almost ten years, we hosted fundraising events, two attended by then Governor of Queensland, Quentin Bryce and raised over $200,000 for MS research. We wanted to learn more about the research underway in Queensland at the time: how does pregnancy affect MS? For many women with MS, disease activity is reduced during pregnancy, but the protective effect of pregnancy wears off after birth. As new parents living with MS, we were excited to dedicate our funds to a research project that resonated.
For the past 15 years I have been involved in another research project: the Australian MS Longitudinal Study. The International Women’s Day mission to help empower women to make informed decisions about their health also resonates with me. I strongly encourage everyone to learn as much as possible about MS (a predominantly female disease), support MS Australia, their local MS Member Organisations and get involved with MS research.
Reflecting on 50 years, I endorse MS Australia’s mission to supercharge the MS research agenda and empower researchers, advocates, volunteers, fundraisers and others in the community – many of whom are women. They are the brilliant people who want to help others whether they live with MS, have family with MS, champion and support people living with MS, or dedicate their professional life to finding better treatments and ultimately working towards a cure.
Keeping up-to-date with MS research, I always note the significant wins and gains made through MS Australia’s ongoing advocacy.
Fabulous women have always made a difference, and this year will be no different – considering what the past 50 years of progress have achieved, imagine what the next 50 years will bring! How fortunate are we to have MS Australia leading the charge.
I have been a National Advocate for MS Australia for over ten years. I am very proud of the changes we have made with the help of the wider MS community, including for women like me and others I know, living with MS. We must continue to make our issues heard, and they are. For many years MS advocacy has been acknowledged and respected by all different political parties: through the National Advocates team developing relationships with their local MPs and Senators and through our Parliamentary Friends of MS, we are making a difference!