Finding strength through words: Karyn’s story

For Karyn, writing has always been more than a hobby – it’s been a lifelong passion. From a young age, she was drawn to poetry, finding comfort and creativity in the written word.

Following her diagnosis of relapsing-remitting MS in 2016, and later secondary progressive MS in 2021, Karyn’s life changed in profound ways, including the loss of her teaching career. Through these challenges, poetry became a constant source of support. Whether in hospital during recovery and rehabilitation, or in quiet moments at home, writing has helped her process and express her experiences.

“Through poetry, I have been able to express the many and varied emotions that come with living with a chronic illness. I enlisted in an online poetry course in 2022 and it has been a slow process getting to work on the course with the help of my support workers and as my health allows.”

In 2025, Karyn was awarded an MS Go for Gold Scholarship, a one-off grant that supports people living with MS and other neurological conditions to pursue meaningful personal goals. For Karyn, this meant investing in a vital tool to continue her writing journey – a new laptop.

“I am so grateful and humbled to have received a Go for Gold Scholarship 2025. The funds have purchased a beautiful new Apple Mac Laptop!”

The impact of the scholarship has been immediate and deeply meaningful. With her new laptop, Karyn has been able to continue developing her skills, completing a memoir writing course and making significant progress on her own writing projects.

“I began writing poetry, studying poetry and recently completed a memoir writing course.”

Writing has also become a powerful outlet during difficult times.

“I have found writing to be such a relief on the really tough days and a way to express deep emotions. Not just about loss but also about joy. Like the first trip to the beach using a beach wheelchair after getting out of six weeks in hospital rehab.”

Karyn is now building towards her goal of publishing a collection of poetry inspired by her lived experience with MS – work that she hopes will resonate with and inspire others.

“My goals include releasing a book of poems related to living with, thriving with and surviving a relentless chronic illness such as MS. I hope this would inspire others through the art of writing to express their own pain and challenges in a positive way.”

She has already begun sharing her work more widely, recently reading one of her poems to loved ones and receiving heartfelt encouragement to publish it.

“I now feel moved to share this poem as I believe it will possibly resonate with people living with chronic illness, those who care for them and perhaps even the amazing donors who continue to support this community.”

Thanks to the support of the MS Go for Gold Scholarship, Karyn now has both the tools and the confidence to keep moving forward.

“I also wanted to share my gratitude and to really thank the donors as I am so grateful to have received the funds and now have a beautiful new computer and have written 4 chapters of a memoir. I still pinch myself every time I open the laptop.”

Karyn’s story is a powerful reminder of how meaningful support can help people living with MS pursue their passions, share their voices, and inspire others along the way.

“But you look so good!”

An original poem by Karyn Miller

But you look so good,
In fact, better than you should!
You told me you were sick, that something is wrong.
Yet you look so good, so healthy and strong. 

I replied with silent hurt that some illness can’t be seen,
that the symptoms are invisible and what you said is quite mean!
Many people suffer not in front of your eyes.
Suffer and keep going with symptoms on the inside 
and they do their very best not to complain and mostly hide.

Hide what they are feeling, behind the straining of their smile.
Hide from constant aches and pains, weakness and fatigue 
and overall dysfunction which puts them in a new league. 
A league of those who stay up at night and hide the terror of this disease 
which is relentless and progressive and leaves them ill at ease.

Uneasy when they struggle to open jars and hold their phones.
Or cancel yet another date with friends who cannot see
they are not the person they once were. 
They are invisible you see.

Waiting so patiently for whatever it throws at them next.
While they are so damn tired they can no longer even text!
To try to explain how much they miss you and the life you all once shared
“but you look so good” makes them hide how much they wish you cared.

Cared that now their life is harder every day, 
every minute and every hour as they debate a shower.
For they know the energy it takes to do this simple task,
they know they cannot do what everyone will ask!

Jump in the car, come for a drive,
go to the shops, set some goals come on just strive!
Strive to be your very best an example to others
of how to face this test of how to live the best you can
be an inspiration, after all it’s part of a master plan.

Whilst hiding in their chronic pain,
hiding at home in the sunshine and rain.
Not wanting to make anyone else feel bad.
Not wanting to fail or show them you’re sad.

Don’t want to complain there are those worse off
Or even worse to hear you scoff “But you look so good!”
“Even better than you should.” 
Just take your pills, lose some weight, fix your attitude and make it great.

Of course, I will, even though I silently know there is no cure.
Despite the treatments that may keep it at bay so I can live to fight yet another day.
To fight with your insides screaming out holding your voice from those who doubt
Because you “look so good” you don’t have the right to say anything they just might find
hard to believe so suffer in silence and roll up your sleeve. 

I won’t be silent and meek 
as I’d like to remind you it’s understanding we seek.
For you are just a casual observer
and I’d like to say this with absolute fervour.
It’s not your place to judge or comment and say careless things without thought or consent.
Invisible illness carries invisible tolls 
and being misunderstood is like hot burning coals. 

Perhaps next time you want to say “but you look so good” or “have a nice day!”
Enquire just how I am going, ask about what it is you cannot be knowing.
Be patient and kind and offer to help.
Remember this illness is not for a day or a week and what we are asking is merely you
seek understanding, connection and thoughtful reflection.