International Women’s Day Speech 2024

Whispers of Resilience is an amazing book full of inspiring stories from mostly women and a couple of men about their experiences of Multiple Sclerosis.  Each story also has a QR code which is a link to video interviews with each author.  It was compiled by the publisher, Justine Martin, who also has MS, in an effort to raise awareness about an often misunderstood disease and to raise money for MS research.  Within weeks of being published it became an Amazon Best Seller in a number of categories.  Our aim is to get it into the hands of as many people as possible, particularly those who have had an MS diagnosis, in order to provide a broad picture of an incredibly puzzling condition.

I’m going to read parts of my chapter in Whispers of Resilience - weaved through my speech this morning. To give you a taste of what you can find in the book but also as an opportunity to encourage women to speak out and for men to listen to and, where necessary, amplify the voices of women:

It was a reasonably typical northern hemisphere autumn day in 1990, except I was at St George’s Hospital in Tooting, London, sitting in a neurologist’s office who was telling me that in his opinion, following a battery of tests that I had had a few weeks earlier, I had MS.  I needed to have a lumbar puncture to be 100% sure of the diagnosis but he thought it would be inevitable.  He further explained that a lumbar puncture isn’t particularly pleasant and that a new machine had been developed called an MRI.  This magical invention would be able to diagnose the MS just by doing a scan similar to a CAT scan but a little bit noisier.  Unfortunately the NHS only had a few machines available in the UK at the time and given he knew I was about to migrate to Australia, suggested it would be much easier to have one in Sydney when I got there.  I asked him what my future was going to look like and he suggested that it would be pretty normal but I would probably find myself needing a wheelchair when I reached my 50s.  

I was 23 years old and I was sitting in the hospital with my grandmother.  My parents had migrated to Australia a few years before so grandma came to the appointment with me.  My grandmother was not well known for her subtlety, either then or as she got older but in that moment she was everything I needed.  She was practical and no nonsense.  She offered no sympathy or worried glances but she did say she thought I should just enjoy myself whilst I was young, give up my job as a Marketing Executive with Newsweek International, get a job that wouldn’t give me too much stress, not worry about having children and just get on with life for as long as I could.

I, of course, did none of those things.  

Multiple Sclerosis, or MS, is a degenerative neurological disease.  75% of people with MS are women. It often appears between late adolescence and thirty years of age.  It strikes women right at the time of their lives when they are most productive; forming relationships, having babies, extending their careers, raising children.  It hits out of the blue with no warning and there is still no cure.  There are over 33,000 people with MS in Australia, a number that has increased over 30% in the last 5 years.  I was a teenager when my first symptoms developed and 20 when I had my first big attack.  My right arm went numb from the fingers up over the course of a lunch and lasted for several weeks along with some other weird and wonderful neuropathic symptoms that have never gone away.

We now know from some amazing research from Harvard University that 100% of people with MS have been infected with the Epstein Barr Virus which is a simple and common respiratory virus that 90% of the population have had - but we don’t know what then triggers MS to develop.  There are some risk factors like living further away from the equator, like having a family member with MS, like having another auto-immune disease but we don’t really know why and we are a long way away from understanding this disease fully.  Although what we do know now is that if we can create a vaccine for EBV, we will prevent MS from developing.  That means our grandchildren will never have to face an uncertain future and MS will be relegated to the medical history books.

I find MS to be a fascinating disease because it involves my favourite system in the body; our nervous system.  It is a completely unique condition - no one with MS will have the same experience because the disease impacts the coating that protects our nerves.  When the coating - or Myelin - is damaged, the messages between our nerves get messed up.  There are millions of neuronal connections in our nervous system so the chance of two people having damage in exactly the same nerves is basically impossible.  MS disease progression is entirely unique as well.  I only have about 5 MS lesions, which is nothing compared to other people, but I have a really big one in my parietal lobe and another significant one at C2/3 in my Cervical Spine as well as a few others dotted around my brain.  These 2 lesions are enough to cause significant balance issues, mobility issues, hearing, speech and swallowing issues.  MS also causes extreme fatigue, cognition issues and for me I can’t thermoregulate which means if it’s a hot day then my symptoms will be much much worse.  If I’m fatigued my symptoms also get worse.  So on some days it can look like I have nothing wrong with me and on others I actually can’t get out of bed because my legs don’t work at all.  I am also a complete expert at falling over which I usually find hilarious.

A couple of months after moving to Australia I continued with the investigations that they had started in the UK. 

Following the MRI, I had my appointment with the neurologist.  I expected it to be fairly straightforward but no.  The neurologist said that there was no evidence of any demyelination and that my symptoms were most likely caused by “boyfriend trouble” and that I should seek counselling with a psychiatrist.  I was 23, I was in shock and I was furious but I was polite, respectful and went on my way with my tail between my legs, thinking I was a crazy hypochondriac whose weird neuropathy was all in her head.

I’m pretty confident that “boyfriend trouble” is not listed in the medical text books as a risk factor for MS but what would I know?  And just for the record I didn’t even have a boyfriend at that time when I was 20…

For years, women have been fighting to be heard by the medical profession but I have seen it and experienced it across all sectors.  I wasn’t actually diagnosed until 2018 so that doctor’s’ dismissal of me as a young woman meant I went without Disease Modifying Therapies for over 20 years.  I wonder whether I would need Ruby now if I had been diagnosed in 1991, I would have had the big lesion in my brain but I wonder whether I would have the lesion in my cervical spine.  

When we fail to listen to the voices of women we fail everybody -  but it is changing - slowly but surely…

“You know I call you my famous patient”.  “No, I didn’t know that” I replied to one of my lovely doctors.  Without looking at his notes, my Interventional Radiologist, Eisen, reeled off my complex medical history, including the 10 years of chronic lower back and pelvic pain which all other doctors had passed off as psoriatic arthritis or endometriosis; essentially telling me to put up with it rather than explore it further.  I’d only seen him in his rooms once before and then in theatre as he fixed one of my pelvic veins.  I was impressed.  He told me he had presented me (anonymously) at Grand Rounds and at a conference.  He now tells me he uses my story as a teaching tool - a teaching tool on how NOT to do medicine.  About listening to and respecting your patients.  

A few years later I was back in his offices to see a different doctor but Eisen bumped into me in the waiting room.  He gave me a big hug and asked me to come into his room because he wanted to show me something.  Curiously I followed him in.  He showed me multiple posters and hundreds of brochures.  He pointed to everything and said “this is because of you”.  I looked a bit taken aback as he went on “I decided after treating you and using you as a case study to train other doctors, I was not going to allow another woman to be treated like you were, so we created all of this information for patients, for doctors’ surgery waiting rooms, for doctors, nurses, clinics, to be distributed everywhere”.  

Whilst my story is about medical neglect it is also about creating a team and the power of connection.  I experienced years of being dismissed by male doctors, until I found my voice and said no.  Now I have an amazing team of mainly male doctors.  They are brilliant and I love them.  I will not waste my time or money on doctors who do not listen to me and won’t partner with me, irrespective of whether they are men or women.  I have been increasingly telling my doctors and their registrars about the doctor who misdiagnosed MS as boyfriend trouble - every single one of them has been outraged.  I hope it will be a reminder to all of them, throughout their careers, to listen to their patients, respect them and work with them as equals.

It is hard work battling a system that has a history of mysogeny and paternalism but it is essential that we all call it out when we see it because when women are not treated equitably then we all fail.  It is uncomfortable and sometimes it’s scary but there is power in the group.  There are a small number of people who are in positions where they can call it our loudly and publicly but there are literally billions of us who can use our voices quietly every single day.  

We can quietly take people aside and explain when we see everyday sexism.

We can make a point of not laughing at inappropriate jokes, 

We can speak to our children about respect.  

We can write letters to our schools, to our local members to our community leaders. 

Most of all though we can check ourselves:

Am I listening to the voices of women and girls?  

Am I giving women and girls an opportunity to speak?  

Are the words I am using building up or diminishing women?  

When I feel challenged do I search myself and ask what is it in me that is reacting to this?  

Do we ask ourselves would I say what I’m saying about this woman or girl if she were a man or a boy?  

Are we changing our behaviour?

If we ALL do this then we can be part of the change.

International Women’s Day is a day - or a month - for the world to pause and contemplate how am I amplifying or diminishing the voices of women?  Am I part of the solution or am I part of the problem?  

I found my voice when I was about 30.  Now that I have found it I will not stop using it.  Often quietly but increasingly loud;  I will shout it from the rooftops - or I will write a book.