Poetry and MS

In February 2003, a crack appeared in the fabric of my life – except no, that’s not quite true. The crack had been increasingly apparent in the preceding few years: occasional opacities in my vision; tingling in my legs and torso; and awful, bone-crushing exhaustion. In February 2003, this crack was given a name – multiple sclerosis.

The diagnosis was unsettling but it explained all of my symptoms. Yet I soon discovered that my diagnosis did not make it easier for me to explain those symptoms to friends, family and colleagues. Even now, seventeen years later, it can be hard to communicate the feelings of living in this body, with its intermittent numbness, dizziness and slowed thinking.

I am not alone in this: it is acknowledged within the MS community that many of us have difficulty describing our illness to those around us.

As a poet, former teacher, and confirmed chatterbox, words are my stock-in-trade. Therefore, I have developed the Poetry and Multiple Sclerosis (P.a.M.S.) Study, at the University of Edinburgh, to explore whether writing poems may provide new ways to express our MS to those around us. The first two groups of participants have completed their writing and I am recruiting people to take part in a third group.

Study participation starts with a 1:1 online interview where participants can talk to me about their experiences of living with MS. This will be followed by a series of up to four online poetry workshops, in which up to three participants and I will explore writing poems about MS. The sessions will be flexible and relaxed, so everybody can take breaks or access support as required or desired. No previous poetry experience is necessary to take part in the study – just a willingness to give it a go!

After the workshops, participants will be invited to share one or more of their poems with somebody they trust, such as a friend or family member, however nobody will be obliged to share their writing unless they wish to do so. To round off the study, I’ll offer participants a follow up 1:1 online interview to explore their experiences of taking part.

We don’t yet know whether writing and sharing poems will help us to develop new ways of communicating our MS. However, people may find writing poems enjoyable and they may find it helpful to share the poems with people they know. Some participants may also enjoy the social aspect of the workshops and value the opportunity to spend time with others who have similar illness experiences to their own.

Considering joining us? Or just want to find out more?

Take a look at our study website. If you have any questions or would like to get in touch, don’t hesitate: our contact details are on the site.

Thanks for reading,

Georgi Gill