Participate in a Poetry and MS Study
Since my diagnosis with relapse remitting MS in 2003, I have found it difficult to describe my illness experiences and symptoms to family, friends and colleagues. I have become fluent in its medical terminology. My mouth no longer stumbles over the terms dysesthesia, optic neuritis or cognitive dysfunction. Yet these words don’t help me to communicate what it feels like to live in this body, with its intermittent numbness, blurred vision, dizziness and slowed thinking. I am not alone in this: it is acknowledged within the MS community, that many of us have difficulty explaining our illness to those around us.
As a poet, words are my stock-in-trade. It’s no surprise that I am keen to find potential ways to improve this communication shortfall. This desire has led me to develop the Poetry and Multiple Sclerosis (P.a.M.S.) Study, at the University of Edinburgh. In the study, I am inviting people with MS to write poems about their illness to explore whether writing poetry may give us new ways to communicate our MS to those around us.
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 try writing poems about our MS. These sessions will be flexible and relaxed, so everybody can take breaks or access support as needed. No previous poetry experience is required to take part in the study – just a willingness to give it a go.
After the workshop series is finished, participants will have the opportunity to share one or more of their poems with a contact of their choosing, such as a friend, family member or colleague. Poem sharing is optional and no one has to share their poems if they do not 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. With participants’ permission, I will also approach some of the people with whom poems were shared and ask about their perspectives of the study.
There is no guarantee that writing and sharing poems will help us to develop new ways of communicating our MS. However, people may find the experience of 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.
To find out more about the P.a.M.S. Study, take a look at the <<study website>>. If you have any questions or would like to get in touch, my contact details are on the site.
Thanks for reading,