Navigating Multiple Sclerosis Together

QA: What made you focus your career in MS?

Jane: During my nursing training, I spent three months caring for people living with MS. I knew then that I wanted to dedicate my career to this field. I was drawn to MS because of its many complexities, the chance to make a difference and the opportunity to empower patients and their families.

Janette: I started working in neurology in 1991 and cared for young people showing extremes in disease progression. Because treatment options were limited and unlicensed then, they became like family members to our nursing team. I moved into MS clinical trials in 1997 and then became a MS Specialist Nurse. I joined the pharmaceutical industry in 2011, continuing my career in MS.

QA: How has MS care evolved over your career?

Jane: Care used to be reactive; a ‘watch and wait' approach focusing on symptom management. Today, we know that early, proactive treatment leads to significantly better outcomes.1 It has been a privilege to witness the evolution of high-efficacy disease modifying treatments.

Janette: Comparing today's level of care and disease control progress to 30 years ago, we no longer see the same levels of disability.1 Instead of ‘watch and wait’, we monitor disease activity with MRI scans. The landscape in MS is forever changing.

QA: What are the hidden realities of MS?

Jane: MS involves ‘invisible’ symptoms such as nerve pain, cognitive issues, and extreme fatigue - that profoundly impact lives.2 Because these aren't visible, people with MS face significant prejudice and social isolation. Patients often struggle with a sense of ‘loss of self'.

Janette: Hidden symptoms have always received the occasional response of: “You don’t look ill”. The impact is that some people stop discussing them entirely with families and colleagues. However, some become MS warriors, informing others about what silent symptoms mean to them by educating through shared lived experiences.

QA: What are common stigmas and fears at diagnosis?

Jane: The perception of 'how long until I'm in a wheelchair?' remains a very real fear at the time of diagnosis. I believe that how well a healthcare provider manages the diagnosis makes the difference in a patient's outlook, adjustment, and coping strategies.

Janette: Public perception of someone with MS is still often visualised as eventually requiring a wheelchair. When I held my new diagnosis clinic, I would ask the person what they thought when they heard ‘multiple sclerosis’, and nine out of ten would say a wheelchair user. The biggest knowledge gap is the uneducated public making assumptions.

QA: How can we help shatter the MS ‘ceilings’?

Jane: I believe there are several misconceptions that we must continue to break through. We must challenge the career and pregnancy ‘ceiling'; ensuring patients know that a diagnosis doesn't have to end a career, and modern treatments support the fact that having MS does not preclude starting a family.3

Janette: Thanks to MS treatment, and lifestyle management from MS Specialist Nurses, people with the condition can shatter most stereotypes applied to an MS diagnosis. Through educating patients, nurses have changed the narrative from: “Can I still do that?” to confidently declare, “I am going to go travelling” or “I am going to start a family”.

An MS diagnosis is undeniably challenging, but the evolving landscape of modern care and the steadfast dedication of healthcare professionals offer immense hope. By breaking down stigmas and proactively managing symptoms, people living with MS can continue to live an empowered life. 

Disclaimer:This information is provided for general educational purposes only. Patients should always speak to their GP or neurologist for personalised clinical decisions and medical advice.