Writing through MS: a promise, a release, a way to help

There’s a quote I read recently that stuck with me:

That every day, people in organisations like the MS Society wake up, open their laptops, and do their work because they want to make a difference.

It made me stop for a moment.

Not because I didn’t already know that people care — but because it reminded me that MS isn’t just something that happens to people. It’s something that creates ripples. Through families, through friendships, through communities, and through the quiet, everyday work of people who choose to show up.

My late dad, Howard, had primary progressive MS. My mum, who is thankfully still with us, lives with relapsing remitting MS. So for me, MS has never been some distant medical term or something you only hear about in leaflets. It’s been there in the background of childhood, in the rhythm of family life, and later in the heavier ways too. 

A visit that stayed with me: the Tissue Bank

One of the moments that’s stayed with me recently was visiting the Tissue Bank — alongside my sister, Hannah.

The MS Society Tissue Bank allows people to donate their brain and spinal cord for MS research after their death. We were there because our dad gave his brain to the Tissue Bank. And we’ve been working with the MS Society to share his story and encourage donations to MS research.

Read more about Howard's story

It’s hard to explain what visiting the Tissue Bank feels like unless you’ve done something similar. It’s quiet. It was emotional in a way that didn’t show itself immediately. It made me think about the past, and about the future, all at once.  

Being there brought my dad into my mind so strongly.   

Dad’s MS was primary progressive, and anyone who has known this up close knows how relentlessly it can take from someone. Not only physically, but by chipping away at independence, at ease, at everyday things other people take for granted.  

Looking around the lab with my sister, I felt a mix of things: sadness, gratitude, anger, love.  

And also determination.  

Writing helped me reflect on my emotions

After our visit, I wrote this poem. It came from the emotions I carried after visiting the Tissue Bank. Writing it helped me reflect on loss, generosity, and the legacy people leave behind.

The Brain, Our Silent Powerhouse

We walk each day on borrowed grace,

A universe alive within our face,

A fragile storm of light and thread,

Where every thought and dream is bred.

So often taken for granted, unseen,

This quiet engine, fierce and keen,

Commands our laughter, tears, and song,

The pulse that says where we belong.

It tells our hands how to reach and hold,

Turns whispered wishes into bold,

Guides our steps, our breath, our sight,

Paints our world in dark and light.

But when the pathways falter and fray,

When sparks misfire or fade away,

Lives are changed in ways profound,

By battles fought on silent ground.

MS steals strength in subtle ways,

A thief of certainty, of steadier days.

Parkinson’s shakes what once was still,

Challenges the body, tests the will.

They rob of ease, of rhythm, of flow,

Of things we never thought we’d lose or know.

They rewrite futures, shift each plan,

Redefine the limits of woman and man.

Yet even here, in loss and fight,

There lives a fierce, unyielding light.

For courage grows where pain has been,

And hope stands tall in shattered scenes.

Awareness is our rising flame,

To speak their truth, to say their name.

To honour struggle, to demand more care,

To show the world that love is there.

The brain, so powerful, so divine,

A masterpiece of flawed design,

Deserves our wonder, our respect,

Our deepest care, our best protect.

Though much is taken, much is lost,

The human spirit counts the cost,

And still believes, and still will fight,

For healing hands and futures bright.

So let this poem be voice and plea,

For empathy, for unity,

For science, strength, and hope renewed,

For brighter days and miracles pursued.

Why I keep writing 

I write for a few reasons.

One is a promise I made to my dad — to keep writing.

But it’s more than that now.

Writing has become a way for me to raise awareness, yes, but also a way for me to connect. To say the things people often don’t say. To put words to experiences that can be isolating and heavy.

MS affects the body — but living around MS affects the mind too.  

So many people are quietly struggling. Quietly masking. Quietly managing symptoms that feel too personal, too messy, too “embarrassing” to share.  

But those are exactly the things we need to talk about.  

Not for attention. Not for sympathy.

But because honesty helps.

If this helps one person, it matters

I’m sharing this because I hope it might help someone - even if it’s just one person.

If you’re reading this and you’ve felt shame about symptoms you can’t control… you’re not alone.

If you’ve felt depressed and didn’t know where to put the feelings… you’re not alone.

And if you’ve ever thought, “I don’t want to talk about this because it will make people uncomfortable,” I want you to know something:

Your life is not an inconvenience.

Your symptoms are not a moral failing.

And your truth is allowed to take up space.

A quiet kind of activism 

I used to think awareness was something loud — big campaigns, big speeches, big fundraising events.

But I’m starting to believe there’s also a quieter kind of activism.

The kind where you tell the truth.

The kind where you write the poem.

The kind where you say “bladder problems” out loud, without apologising.

And the kind where you keep going, even when you’re tired.

Even when you’re grieving.

Even when your mental health is struggling.

For my dad. For my mum. For anyone living with MS.

MS has shaped my family’s life since I can remember.

My dad, Howard, lived with primary progressive MS.

My mum lives with relapsing remitting MS.

And I carry both of those realities with me.

So I write

Because I promised I would.

Because it helps me.

Because it helps me say the things I used to hide.

And because maybe — just maybe — someone reading this will feel a little less alone.

And honestly?

If it helps one person, it’s worth it.

Get support

If you’ve been impacted by any of the issues in this blog our free MS Helpline gives emotional support and information to everyone affected by MS. Call 0808 800 8000 or click here to find out more.