I am a 52-year-old woman living in regional Victoria, a mother to two adult boys, a wife and a Physiotherapist. My professional focus has, for the most part, been on retraining biomechanics in people with chronic and complex pain presentations. Â
MS Diagnosis
I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2016, aged 42.
I was actually OK with being told I had MS – given my headaches, facial numbness and memory issues – I had feared worse. I felt MS was something I could deal with, adapt to, learn to manage day after day – I was OK today, I was going to find ways to be OK tomorrow and the tomorrows after that.
What I was not OK with was being told “there is nothing you can do to help [yourself]”.  Maybe underneath, I had some anger at the disease, but outwardly, I directed this anger at being told I was powerless in my relationship with that disease. I chose not to accept that until I had proven it to be true myself.
I am a scientist with an ingrained respect for empirical evidence, but I am also an experienced clinician who knows that there are vast gaps in our knowledge and that possibilities abound in what we do not yet ‘know’.
So, my first response to my diagnosis was to go to the literature to find out what was “known” and what was “possible but yet to be proven”. There was so much there!
Endless research publications, each claiming something a little different to the previous and some outright refuting the findings of others. Despite my previous tertiary studies in Research Methods, I felt inadequately equipped to triage what I was reading – how to pick the best-quality research on which I would base my decisions.
A new career direction was forming here…
Life after diagnosis
A strong positive in receiving a diagnosis like MS is that it triggers an honest self-review of how you are leading your life.
Whilst doing my best to be present and available for my then teenage boys, I was working really unreasonable hours – long days in clinic during the week, managing the business as well as a patient-list, but also teaching Dance Medicine courses somewhere around Australia on weekends once a month. That had to change immediately!
I needed to respect my fatigue, prioritise my sleep, and spend some time nurturing myself first, rather than everyone else.
Decreasing to more standard working hours did, however, allow room for a hobby (my first in at least 15 years). Of course, says anyone who knows me, this hobby was returning to study. I’m an insatiably curious person, and I really did need those tools to scrutinise that medical research.
Over the following six years, I completed a Masters in Clinical Epidemiology, then articulated into a Masters of Medical Statistics. I have much to thank my family for, considering this was all completed in the evenings and weekends of their lives too.
Re-entering study after twenty years was daunting, and knowing my cognitive capacity was a little impacted by my MS and relentless workload over many years, I did not know what to expect of myself. I was surprised and relieved to find I could still do it – I can’t pretend not to be proud of the results I achieved.
Hope is the counterweight to fear
I have spent the last thirty years supporting people through the process of understanding, accepting, and best managing challenges to their health and well-being.
Over this time, I have spent many hours listening to countless individuals from all walks of life talk about their pain or loss of function and how this has impacted their life, their relationships, their hopes and dreams and their mental well-being.
I saw the power of fear in my patients every day – it is the enemy of self-belief, it amplifies pain and negative emotions, dilutes our trust (in ourselves and others), and it bleeds our hope and determination. When fear rules, we see and hear the world differently – it’s full of threat. When fear wins, it shuts us down and robs us of the ability to move forward effectively.
As a patient, there are two essential keys to unlocking fear – feeling heard and receiving education in a language that makes sense to you the individual and addresses your individual challenges and concerns. Personalised education is the antidote to fear.
Hope is the counterweight to fear. It allows us to think positively, to engage confidently in life and to see our full potential – with or without injury, with or without MS.
I believe in the power of health
My approach to managing MS, is to focus on being as healthy as I possibly can be. My goal is to be so healthy that there is little room for my disease.
I don’t wait for issues to present themselves before addressing them. I am not waiting for my physical or cognitive function to fail before working on ways to improve them.
I don’t deny the likelihood that I am going to lose function over time, but if I can start as high up the ladder as I can, then I have more room to move when one system or another begins to falter.
I believe in my body and in the power of health. I believe that, given the right supports and a given purpose, it will adapt. As the saying goes, “health is more than the simple absence of disease”.
I would take this statement further: just as the absence of disease does not alone grant good health, the presence of disease does not diminish the power of good health – it does, however, increase its importance.
A wardrobe of many hats
I’ve been part of the LEEP for almost a year now and am so grateful to MS Australia for supporting such a powerful avenue for patient voices.
I have involved myself wherever I can, largely in contributions to research proposals and some public advocacy opportunities. I’m still working on refining my platform and goals and finding my voice.
I’m juggling a wardrobe of many hats – health clinician, medical researcher, educator, and person living with MS – and each hat brings its own perspective to any question or situation. My challenge now is learning which hat to wear when, or indeed how to wear them all at once.
