MS doesn’t always make sense and poems don’t need to either

Poetry can be a great way to explore and communicate MS experiences. Firstly, a poem isn’t like a novel or a memoir in that it doesn’t have to make sense. For me, that removed the pressure to write what I know about MS. In poems I can explore how I feel about the condition.

With MS it’s hard to get a sense of what direction things will go in, what your progression will be. There’s so much uncertainty. And with poetry you don’t need to be certain.

A poem doesn’t have to have a sensible beginning, middle and end. That was really helpful, particularly when I was newly diagnosed and had no idea how my MS would progress, and therefore my future unfold.

To start writing you don’t need a fancy computer software package, just a pen and paper. Or if that doesn’t work for you, you could record your writing as a voice note.

You hear some ridiculous ideas like with poetry you need to write every day, but that might not be realistic. Or I’ve heard it needs to be by hand otherwise it’s not authentic, but that’s ableist nonsense.

It doesn’t have to be in a certain way.

I switched from prose to poetry because my fatigue and brain fog made plotting feel too complicated and amorphous. Philosophically, I was struggling with any idea of certainty and the way that a novel usually tells a story.

My tutor at the time suggested poetry and I got hooked quite quickly. There’s scope for word play and a real impetus to get the most out of those words. If you’re not feeling well, but you could manage a three-line poem, it could be a haiku.

Poems can help people say what’s hard to say

The PhD research I did at the University of Edinburgh explored how poetry might give us new ways to understand and communicate the experience of MS.

People told us about their lived experience. They spoke about what it’s like to be in a body with MS, as well as what it’s like to attend clinical appointments. And how MS affects them socially.

Some used their poems as a bridge to what might have otherwise been an uncomfortable conversation.

Others, who found it hard to talk about MS with friends and loved ones, found that a poem was a safe, boundaried space. They could share the poem without having a long conversation about difficult experiences.

Some participants probably gained most from creating the poems. While for others, the benefit was in finding new people to chat and share with.

Some of them wrote poems entirely about MS, but they thought they didn’t talk about MS. They were making poems, so there was a purpose to it. It then became something they could give to friends of family and it wasn’t just ‘moaning’. It’s more ‘I’ve made this, would you like to read it?’.

The poem can be exposing and it’s making the writer vulnerable, but it’s also separate, not just ‘me’. There’s a bit of a scaffold cover, so if it feels too personal they could say, ‘what did you think of the structure’, for example.

Writing in groups or solo can be rewarding

For anyone more reserved who would rather pick up a pen without joining a group, the benefits are still there. Several of the study participants wrote on their own and found this to be enjoyable and validating in itself.

I can also say that a quiet 10 minutes spent writing alone brings a sense of achievement and an undertow of calm to my day. Even if, as in most cases, I don’t share that writing with anybody.

Bringing the human to the consulting room

Clinicians and researchers also have something to learn from creative works by chronically ill people. It can deepen their understanding of their patients and could also motivate them to continue the challenging work that they do.

Neurologist and researcher, Professor Anna Williams, spoke to this better than me after reading the poems written by people with MS in my research:

"These poems remind us of our patients’ humanity, enhance our understanding of these poets as people, and of their problems, and are a prompt to act accordingly. For me, this anthology provides a ray of hope, providing a means to maintain emotional wellbeing and mental health of both sides of the clinician-patient relationship."

So whatever piques your creative curiosity, just give it a go! Who knows? You may discover hidden talents or feel a sense of pride in having created something. There’s a good chance you’ll find a fun new way to pass the time and maybe even meet new friends.

poeMS: an anthology by people living with multiple sclerosis (2025) edited by Georgi Gill, is available as a free download here.  

We're running a free course for people living with MS in January, 2027, based on Dr Georgi Gill’s Poems on My Mind. You can find full details on our Eventbrite page.