MS: Busting the Myths
It has many faces.
In fact, in New Zealand, it has 4000 faces, and 2.8 million worldwide.
Did you know that Multiple Sclerosis is the leading cause of non-traumatic disability among young and middle-aged adults in many developed countries? In New Zealand the average age of diagnosis is 38 and people are usually diagnosed between 20 and 50, prime time for careers, families and building a future.
You might look at a person with Multiple Sclerosis and think “But you look fine. You don’t look sick.” But 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 MS is different. This Awareness Week, we wish to share with you real stories from New Zealanders who have been impacted by this disease. These people have chosen to share their MS stories wishing to increase the knowledge and understanding of MS and to inspire others to live well with MS.
I have an invisible and sometimes visible friend who does things to make me cry.
“Fiona has brought me love, satisfaction and the meaning of true internal peace and that I wouldn’t change. From retraining as a Clinical Hypnotherapist, to marrying my husband and lifelong loyal supporter to my wonderful daughter, MS has brought rewards which are invaluable to me now.”
Lisa, Clinical Hypnotherapist.
My Multiple Sclerosis journey to happiness, joy and writing
“Life does change when you have Multiple Sclerosis, you can still enjoy a great life, a joyous life, a life full of love, do not let Multiple Sclerosis define you or who you are.”
Gary, published author.
My mum’s MS journey has not been an easy one by any means but she always finds a way to come out on top.
With MS, every little bit of energy helps and helping her with the stairs meant that she could save her energy for other things that she wanted to do instead. This is just one of the ways my family have adapted to help make mum’s life easier and definitely a lot more entertaining.
Shannon, mother has MS.
Emotionally my MS is very draining and an illness that no one can see.
At work, I spill and drop things often, but I don’t let it stop me doing it. It’s hard to keep up with my kids most days also, but I do my best and have taught them the best I can to get them to understand mum is ok I just fall more than other mums.
Amanda, Nail and Beauty Therapist
It has been an often very dark journey, but not as often as it has been sunlit.
We are alone in this struggle. We truly are. But we are all alone in it together. All of us are on this journey, from our children to our work colleagues. But there is strength in numbers. People genuinely care. And it’s okay to let them try to ease your difficulty.
David, Personal Trainer
This disease can be silent, invisible and misunderstood.
I was/we were sad, worried but not defeated. I’ve always been known for being a bit stubborn. Being told “there is no cure and nothing you can do” just created the opposite effect of me looking for answers and things I could do. There was a lot indeed.
Magali, Nutrition and Lifestyle Health Coach specialising in MS and autoimmunity.
Every case is different and sometimes you just get lucky.
He died with MS, not of it and he proves that a diagnosis of MS does not always mean an early end to life. He lived a long and full life, managing his illness and carrying on anyway.
He is most certainly an inspiration.
Alison, Dad and brother impacted by MS.
MS is not a death sentence and doesn’t mean that you can’t keep doing the things that you love
I let myself be vulnerable, sought help from various professionals and have committed to making changes in my life so that I can keep being active and doing the things that I love to do! I have also been fortunate enough to meet a couple of other MS multisport athletes in NZ so now we have a little ‘epic’ squad.
Sarah, Sports Enthusiast
I am very thankful to have my official diagnosis as I always knew I had MS.
“In 2019 I was studying to be an Early Childhood teacher, I was on my last teaching placement when shingles appeared. One month later I had blurry and double vision. Two days later I was numb from the waist down.”
Selena
My motivation.
I’ve had the privilege of hearing stories of incredible resilience and positivity. A huge inspiration and reminder to myself around the importance of putting out ‘good vibes’ for the benefit of both yourself and others. And also a timely reminder not to take my own ability to run (no matter how amateur) for granted.
Ken, Professional and fundraiser
Blake – Avid traveller and positive thinker
I woke up needing to use the toilet. Rubbing my eyes and blinking furiously, I tried to focus my vision. “Damn, I need more sleep” I remember thinking as I crawled back into bed. The night before, we had celebrated my partner’s birthday and when I woke with my vision blurred and reaping the early signs of a hangover, I was sure I just needed more sleep. It wasn’t until we got up a few hours later and sat down for breakfast that I said to Anna “I think there’s something wrong. I can’t see.”