Everybody's journey with MS is different, and that is what makes it such a difficult disease. There is no normal prognosis pathway. There is only your new normal, which you can choose to live with or fight.
Thirty years on from my diagnosis, I can say this: for me it began the most inspirational and positive journey of my life.
But for MS I would not be the person I am today. It has taught me to risk, laugh, love and appreciate more in life than I ever did as a normal person. I will never look back on my journey with sadness or regret. I only ever look forward, and I am grateful to everyone who has chosen to take this journey with me.
My advice for anyone living a 'new normal' life
Be positive!
Learn to laugh at your new normal and accept it. The dinner party stories you can contribute are quite simply spectacular.Be kind to those around you
They struggle watching you as much as you struggle living it. They need your gratitude and your support. Remember that they are normal, and their resilience has never been tested the way ours has.Build resilience and adapt
Be tenacious and bold. Adjust to whatever life throws at you. You cannot make it disappear, you can only find acceptance and understanding. Bounce back, dust off and dance. No matter how crazy you wobble.Use your spoons wisely
When things get tough, lean on the people around you. This is often the hardest part, working out what you can do in a day without running out of spoons. Christine Miserandino's Spoon Theory explains it better than I can. Accept help. Delegate. Focus on what matters most, and do not sweat the small stuff, because it will still be there tomorrow.Be passionate
Whatever you do, do it well. Live in the moment and appreciate what you have. Looking backwards with regret rather than forwards with optimism will only bring you sadness. Make the most of each experience with the people beside you. Make memories from moments, and look back with love.Be irreplaceable!
Coco Chanel said that to be irreplaceable one must always be different. You already are.
For students, and anyone who wants the evidence
A personal account. Two things in it belong to somebody else.
Chanel, C., quoted in Haedrich, M. (1971) Coco Chanel Secrète. Paris: Robert Laffont, p. 308.
Miserandino, C. (2003) The Spoon Theory. Available at: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ (Accessed: [insert date]).
IF YOU HAVE JUST BEEN DIAGNOSED
Talk to the people who helped me.
MSWA gave me the information I needed and the reassurance that somebody would be there. Thirty years on, they still are. If you are somewhere near the start of this, start with them rather than with the internet.
Cite this article
Reference list
Satterthwaite, M-J. (2016) MS: my diagnosis, which began an incredible journey. Revised August 2026. Scope Vision. Available at: https://scopevision.com.au/blog/ms-the-start-of-my-journey (Accessed: [insert date]).
In text
(Satterthwaite, 2016)
Keep reading
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Two bends in the road, and the business that came out of the second one.
What I would say to the woman four years before the diagnosis.
The one variable none of us controls, and what to do about it.
Somebody you know
is somewhere near the start.
If they came to mind while you were reading, send this to them. That is the only thing I would ask.
