30 May 2024

Jessica Worsley

Self advocacy and a MS diagnosis

Following a challenging IVF journey and the traumatic birth of my daughter in May 2018 at 27 years old, I was eager to embrace newborn life. Instead, I found myself unwittingly navigating MS symptoms while being dismissed by multiple GPs. Over six months, I experienced severe fatigue, dizziness, balance issues, weakness, and numbness in my hand. Despite expressing my concerns, five GPs brushed them off with comments like “You’re a new mum, you’re supposed to feel awful,” “this is your new normal,” and “your numbness is from holding your baby, try using your other arm.”  

When I raised concerns about breastfeeding issues, I was told that my prolactin levels were unusual, and there might be a benign tumour on my pituitary gland. However, I was advised to wait a few months.  

Uncomfortable with this suggestion, I insisted on an MRI after a fall in the shower (which I now attribute to heat sensitivity). The first clinic declined, but at another clinic (with GP number six), I finally got an MRI the next day. It was a long and terrifying experience, watching a group of people discussing my case without any information given to me.  

Later that day, a GP from the clinic called to inform me that lesions suggesting MS had been found on the MRI and urged me to come in the next day to discuss further. The GP immediately contacted Dr. Leslie Ann Hall (Neuro FMC) and arranged for an urgent appointment, though it took almost four weeks to be seen. The suspicion of MS was high, but it required a battery of blood tests and a traumatic lumbar puncture, which took multiple failed attempts until it was successfully done under CT/X-ray guidance (a practice I wish was standard).  

Eight months after my daughter’s birth and the onset of symptoms, I finally received an official diagnosis and began treatment in the ninth month. It was a frightening and isolating time as a new mother and a young woman newly diagnosed with MS. Joining the MS Society and volunteering on the PLwMS committee provided a lifeline, and the MS nurses became my sanctuary. This experience motivated me to share my journey publicly on social media and podcasts to raise awareness and advocate for others.  

Redirecting my career back to university to gain a degree in disability and inclusion, I now oversee a successful Newly Diagnosed Peer support program at the MS Society SA & NT, providing reassurance, validation, and connection to others. I also mentor clients as part of my role. Early intervention and lived experience support in the first year, I believe, can significantly impact the mental well-being and outcomes for people diagnosed with MS.  

Jessica Worsley is a member of the Lived Experience Expert Panel (LEEP), which brings a wide range of lived experience and expertise to the work of MS Australia. Read more about the LEEP here.

World MS Day, acknowledged on May 30, is a day that fosters global unity and optimism. The 2024-2025 theme ‘Diagnosis’ and ‘My MS Diagnosis’ campaign, advocates for timely and accurate identification of multiple sclerosis (MS). The campaign shares real experiences and urges improved healthcare professional training, research, and clinical progress for MS diagnosis.  

World MS Day is an opportunity to share stories, like this one, raise awareness and campaign with everyone affected by MS.  #MyMSDiagnosis. 

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Jessica Worsley