MS: Busting the Myths
September 14, 2022 | Advocacy, Life with MS, Media
As the National Society for people with Multiple Sclerosis, we provide 18 independent Regional Societies and l000’s of people impacted by Multiple Sclerosis (MS) across New Zealand, with advocacy, guidance, information and education so people living with MS can independently live their best lives.
Multiple Sclerosis has many different faces, over 4,000 in New Zealand and 2.8 million worldwide. You might look at a person with MS and think “But you look fine. You don’t look sick.” What you don’t see are the daily struggles, the overwhelming fatigue making daily tasks impossible, the chronic pain, the blurred vision, the spasticity or inability to lift your own hand.
One of the most difficult parts of Multiple Sclerosis is living with the unseen symptoms.
Everyone’s story and experience of Multiple Sclerosis is different. This Awareness Week, 12th – 18th September 2022, we share real stories from New Zealanders who have been impacted by this disease. These people have chosen to share their MS stories to increase the knowledge and understanding of MS and to inspire others to live well with Multiple Sclerosis.
One of those faces is Blake, who, whilst in Berlin, found himself in a very scary situation “I think there’s something wrong. I can’t see.”
Blake was ‘blissfully unaware that life was about to change’. Five days in hospital, an MRI, three lumber punctures and a range of tests eventually resulted in a diagnosis of Relapsing Remitting MS.
“It was the toughest, most isolating moment of my life. I was laid up in a hospital bed, thousands of kilometres away from family and friends, being told that I now had an incurable, lifelong disease.”
After a battle with the travel insurers, Blake was advised it would be better for his health to return home to access treatment. However, once back in New Zealand, Blake was totally blindsided by his GP “once you have your second relapse, we can start considering which preventative treatment to start you on.” He had to wait to get worse before he could start a preventative treatment.
“It’s been six years since I was diagnosed at 24 years old. I felt robbed of my youth, betrayed by my body. I’m now 30 and looking back on it all; I can see it in a different light. In the time since my diagnosis, I have learnt so much about myself. I’ve learnt what I really value in life and how I want to prioritise my time. I’ve learnt how to listen to my body and truly understand what it needs. I’ve learnt what MS actually is. How varied it is, person to person.”
“If you google MS you’ll find that for every story of hope, there are 100 more stories of despair. This isn’t a fair representation of the MS community! I wish I had known that as I scrolled through endless stories showing nothing but wheelchairs and disability. Hopefully, through sharing my journey, we can highlight a story of hope especially for those newly diagnosed and their loved ones.”
Blake is not alone, there are many Faces of MS to learn from.
Lisa has an invisible friend that does things to make her cry. She has a moment at the start of the day when, in her imagination, she can run, jump and climb the stairs. But then she moves and feels the presence of her invisible friend come with the numbness and tightness taking hold and her legs turn to concrete.
Gary explains how he has learnt to go easy on himself, after reading people with MS use 30% more energy at rest than people without MS.
Amanda describes her MS journey as emotionally draining and an illness that no one can see. She is a beauty therapist but some days she can barely stand up right.
Shannon shares how her Mum’s journey with MS has not been an easy one, but she always finds a way to come out on top and is a super-mum whose feisty personality lights up the room.
And Ken took inspiration from all the Multiple Sclerosis stories full of resilience and positivity and committed to the Taupo 50km Ultramarathon to raise much needed funds for MSNZ.
All these faces are impacted by the results of our recently published Economic Burden Report which highlighted the New Zealand health system could save millions of dollars per year from earlier treatment for those diagnosed and provide positive outcomes for people with MS.
Slowing the progression of MS will generate private and social costs savings beyond avoided pain and suffering. Delaying the disease will support people to be more independent, lessen the need for informal care and improve the probability of staying at work.
The report shows the treatment and support services currently available in New Zealand fall far behind those provided in other countries. We still have a long journey ahead for people with MS to receive the supports they deserve, and we can’t do it alone, we need support to help people like Blake receive the treatment they deserve.
“Listen to medical experts around the world. Let’s catch up with other OECD countries and show Aotearoa to be the progressive country we all like to think it is. Hell, let’s
just do it for the people newly diagnosed with a lifelong condition, feeling lost and without control. Hope goes far; knowing you have accessed the best drugs, at the
prime time of the disease, will go a long way in providing that hope. It’s time to change the rules, so they best serve those who they’re meant to help.“
At Multiple Sclerosis NZ (MSNZ), our mission is to be the voice for all faces of MS, to advocate for better access to treatments, resources and services that improve not only their wellbeing and quality of life but those of their family and friends.
Help us to help the many Faces of MS impacted by this diseases in New Zealand to live their best life.
What is Multiple Sclerosis?
MS is a disease of the central nervous system. MS involves the immune system attacking the protective layer of nerve fibres. This causes communication problems within the central nervous system, which can lead to problems in many systems, including:
The Multiple Sclerosis Society of New Zealand (MSNZ) is a non-profit organisation formed to work with member organisations to meet the needs of people with Multiple Sclerosis, their families, and carers, through national leadership, advocacy, communication, and national and international collaboration.
MSNZ was established in 1967 and provides support, information, educational resources and training to 18 independent Regional Societies supporting people living with MS in their communities.
Phone – 0800 MS LINE (0800 675 463), +64 3 366 2581
Email – National Manager, Nicholas Cowie – nick.cowie@msnz.org.nz
Email – Emily Smith, Fundraising Coordinator – Emily.smith@msnz.org.nz
ENDS