MS: Busting the Myths
August 5, 2025 | Life with MS, My Story
Written by Claire Jewitt & Louise Mckinlay
MS Care Can’t Wait – And Neither Can We
I join the MS Society of NZ in calling for urgent investment in neurology services, MS nurse specialists, and allied healthcare teams. The call for more neurologists isn’t just a wish – it’s a necessity. Early diagnosis is critical. When MS is caught early, there are disease-modifying therapies that can significantly slow its progression. The longer someone waits, the more damage is done – not just physically, but mentally and, for a lot of people like me, financially.
It took nearly five years for me to get diagnosed with multiple sclerosis. Five years of unexplained symptoms, endless medical appointments, referrals, misdiagnoses, and growing anxiety. Five years of navigating a health system that often felt more like an obstacle course than a safety net. It was a confusing and isolating time and extremely expensive. By the time I finally received my diagnosis in 2016, I had spent a literal fortune trying to find answers. Not only having time off work, but in private specialists, MRIs, alternative therapies, and countless tests – each appointment felt like a financial and emotional gamble. And all the while, my health was deteriorating in slow, sometimes imperceptible ways that made me question my own sanity. Was I just tired? Was it stress? Was I imagining things?
I now know that this experience isn’t unusual. In fact, it’s far too common, especially here in Aotearoa New Zealand, where we currently have just 47 neurologists nationwide. That’s well below international recommendations for a population of our size. A recent study showed a 67% increase in MS diagnoses between 2006 and 2022. But the health system has not kept pace. Many people are still waiting months, or years, to see a neurologist. And for Māori and Pacific peoples, delays are often longer still due to systemic inequities and reduced access to care.
Autoimmune conditions like MS disproportionately affect women – around three times as many women are diagnosed with MS as men. That matters, because these are often the same women more likely to have broken work histories due to caregiving responsibilities and who have earned less over their lifetimes due to gender pay inequities. So when illness strikes, it hits harder – financially, socially, and emotionally – with fewer savings, smaller safety nets, and limited access to tailored support.
Squeezed from Every Direction
Unfortunately, I don’t hold out a great deal of hope when I see how bureaucratic directives trickle into government departments, squeezing every last dollar from the very people who can least afford it. Since my eventual diagnosis, I’ve been supporting myself via Income Protection Insurance – a lifeline that expired when I turned 65 a few days ago. I started with a partial benefit and did my best to continue working when I could, taking on contract jobs and small freelance roles. But over time, that work dried up, partly because of my reduced capacity and partly because, let’s be honest, who’s going to employ someone with a degenerative disease who struggles to walk unaided, lives with optic neuritis and bladder issues, and needs a nap in the middle of the day?
Eventually, I was left solely reliant on my insurance payments but now that I’m 65 that income protection has ceased and I need to learn to live on NZ Super and a disability allowance.
Systems Not Designed for Us
Neurology isn’t the only area in crisis. I had a recent experience with a government department that I believe reflects a much wider issue: our social and tax systems are not designed to support people living with chronic, fluctuating conditions. They are designed for people who are either clearly sick or clearly well, nothing in between. There’s no room for nuance, for invisible illness, or for grey areas.
It was emotionally exhausting and detrimental to my MS (which also comes with the complications of transverse myelitis and optic neuritis) to be up against government departments that seemed to have no understanding of the complexity of living with a degenerative disease: the irregular hours, the physical and cognitive unpredictability, the constant mental load of proving you’re unwell enough to deserve support, but somehow well enough to keep fighting for it.
This is what happens in a country where government policy is focused on balancing the books instead of supporting people who have done their best to do the right thing. We worked when we could. We sought help when we needed it. And it feels like we’re being punished for it. More and more people are slipping through the cracks while pretending everything’s fine – because asking for help is so incredibly exhausting.
We Deserve Better
Too often, people with MS are expected to “push through,” to smile through the pain, to remain cheerful and productive while quietly deteriorating inside. That’s not a sustainable model. Not for individuals, not for families, and certainly not for the country.
MS doesn’t wait. It doesn’t pause while you queue for a referral, or take a break because the health system is short-staffed. It doesn’t care about government budgets or delayed policy reviews. And neither should we.
More than anything, we need to be heard. Because this isn’t a rare condition anymore – MS diagnoses in New Zealand rose by 67% between 2006 and 2022, and autoimmune diseases are rising rapidly worldwide. Globally, autoimmune conditions now affect around 1 in 10 people, with women making up about 80% of those affected. This is not a fringe issue. It’s a growing public health crisis.
We need GPs to recognise the early warning signs. We need faster access to diagnostics and treatment. We need equitable care for Māori and Pacific communities. And we need our financial and social systems to reflect the reality of living with long-term, invisible illness.
I’m sharing my story not for sympathy, but in the hope that someone in power is listening. Because we deserve better.
And MS care can’t wait.