14 May 2024

Hannah Woolford

A new mum's silent struggle

Hannah Woolford had been grappling with a series of symptoms for years before her multiple sclerosis (MS) diagnosis, a silent struggle that often went unnoticed.

“For many years prior to diagnosis,” she recalls, “I experienced symptoms such as fatigue, migraines, balance issues, and altered sensations and nerve pain in my back and legs.”

Despite her concerns, her general practitioner put it down to the typical challenges of new motherhood, fluctuating weight, or the demands of her shift work.

Then came July 2017, a turning point that would disrupt the rhythm of her life.

“I woke up one morning with double vision,” she recounts.

For five gruelling weeks, Hannah battled with uncertainty, her world shrinking as her independence faltered. While a substantial course of steroids resolved the problem, the reprieve was short-lived.

“From this point onwards, I have had substantial vision issues that are exacerbated whenever fatigue is at its worst,” she explains.

Then, on November 27, 2017, another milestone marked the journey.

“I woke up having legs numb from my knees down,” she recalls, the sensation jolting her from her routine.

Initially, she brushed it off, attributing it to the sedentary nature of her office job and the changing seasons.

“Well, I was very wrong about this,” she admits. “By Wednesday, I was numb from the base of my rib cage down.”

Her world felt surreal, a haze of confusion clouding her thoughts as she grappled with the loss of sensation, the inability to interpret her own body’s signals.

In desperation, Hannah reached out to her mother, a registered RN/RM.

“Thankfully, I was able to get in to see the GP that afternoon,” she acknowledges, a glimmer of hope amidst the encroaching darkness.

“During the GP appointment, the GP was extremely thorough in doing a variety of neurological observations and assessments including assessing for reflexes. But at this time, he was unable to find give a diagnosis, and instead recommended I go straight to the Lyell McEwin Hospital (LMH) in Adelaide’s northern suburbs.”

Upon arrival at LMH’s emergency department, Hannah handed over her GP’s letter to the triage nurse, her heart pounding with apprehension.

“I had just sat down before being called in,” she recalls, the gravity of the moment sinking in as she was ushered into the heart of the hospital’s bustling activity.

As she lay on the hospital bed, undergoing a flurry of tests and assessments, Hannah couldn’t shake the feeling of impending dread.

“This was definitely an experience that I will never forget,” says Hannah. “I can hear his voice, his accent, and the volume each time I recall what he next said to me.”

The memory is still vivid despite the passage of time.

“So, you’ve got Multiple Sclerosis,” the emergency doctor announced.

“I was 23 years and 25 days old,” she reflects, the weight of the diagnosis settling over her like a heavy shroud. Tears welled in her eyes as a torrent of questions flooded her mind, each one clamouring for attention.

“I asked for a few minutes alone so that I could call my parents and tell them,” she recalls, the support of her loved ones a lifeline as she grappled with the shock of the diagnosis.

“I honestly had no idea,” she admits. “I was moved to the neurology ward (the youngest there by 40 years) and stayed there under the care of a variety of neurologists and a MS Nurse.”

To confirm the diagnosis, Hannah had a lumbar puncture, which provided the clarity she needed regarding the type of MS afflicting her.

“I spent over five days in the hospital receiving a ‘hard core’ steroid via IV to stop the relapse.”

During her hospital stay, Hannah found herself recounting her story to a myriad of medical professionals.

“I remember telling my story of symptoms to a substantial number of interns, nurses, doctors, and whoever else came around and needed the information.”

It was through these conversations that the neurologist made the determination regarding her visual symptoms: they were indeed MS-related, marking the onset of her journey with the condition.

“Being diagnosed with MS,” reflects Hannah, “firstly, I am grateful I knew what it was.”

Her background as a support worker had provided her with a foundation of understanding, yet she knew that everyone’s journey with MS was unique.

“Every single person that I had come across with MS was on a very different journey.”

Reflecting on her own diagnosis journey, Hannah finds herself grappling with a range of emotions.

“I feel like mine happened quickly and smoothly,” she admits, “which I am so grateful for, as I’m acutely aware that not everyone’s journey unfolds in the same manner.”

For Hannah, self-advocacy has been critical when navigating the healthcare system.

“I think the biggest thing is being brave enough to speak up about how you are feeling. You know your body better than anyone else so if something is not right, speak out. I am grateful that I have had experience working in the disability and health care sector, so I knew how the other side ‘works’ and certain terminology and how to advocate for myself.”

Following her diagnosis, Hannah changed GPs within the same clinic to one that had experience with patients that have MS. Additionally, she remained under the care of her neurologist and MS nurse, finding solace and support through the MS Society South Australia & Northern Territory.

As she navigated life with MS, Hannah encountered numerous challenges in employment, relationships, and community participation. Yet amidst the trials, Hannah remained resilient, drawing strength from her unwavering determination to live life on her own terms.

Hannah Woolford 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 Hannah’s experience 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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Hannah Woolford