By Sam Alexandra Rose
Our Patient and Public Involvement Manager Sam blogs monthly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch Syndrome. In this month’s blog, Sam discusses how much of one’s identity is bound up with being a patient and how studying for a PhD in creative writing is enrichening her sense of self and strengthening her ability to cope with a chronic illness.
If you follow Bowel Research UK on social media or are a member of our patient & public involvement network PaRT, you’ll have seen that we held our annual patient conference the Big Bowel Event in early September.
We decided to hold this meeting as an all-day virtual event for those who found it difficult or too inconvenient to travel, plus we are mindful that Covid is still circulating and we need to remain vigilant.
The Big Bowel Event featured separate sessions from speakers on bowel cancer, bowel disease, and patient involvement in research. Dr Anisha Patel gave an excellent keynote address which got the day off to a cracking start. And we ended with a creative writing workshop, which I facilitated. Our small but enthusiastic group spent ninety minutes exploring our identities beyond illness, with much of the information I provided based on what I have learned in the process of studying for a creative writing PhD, which is still ongoing.
Here is a taster of what I covered and why creative writing, identity and illness are often so interwoven.
If you have ever felt more like a patient than a person, you are not alone. This is something I feel strongly myself. With treatment, surgeries, scans, fear of recurrence or flare-ups, long-term effects of treatment and all kinds of emotional issues to contend with, sometimes it’s difficult to stop feeling like a patient and start feeling like ourselves again.
Feeling like a patient is caused by becoming stuck in a constant state of stress or “fight or flight” brought on by our symptoms, diagnoses or the impending threat of constant hospital appointments.
Our identities can be ‘lost’ or altered because of how disruptive a major illness can be to our lives. It could be down to short-term routine disruption, for example not being able to work or needing to change plans to accommodate medical appointments or feeling unwell.
Or it may be longer-term disruption, for example illness meaning we cannot fulfil plans such as career goals or starting a family. Not being able to do what we would like or would normally do can take away part of our identities.
Additionally, being under the constant gaze of medical professionals, feeling a lack of control over the situation, or feeling ashamed or embarrassed (which is even more likely in the realm of bowel diseases and symptoms) can all contribute to people simply not feeling like themselves. We may be left wondering where the “old me” went and how we can get that person back – or we might wonder if that person is gone for good and we need to rethink our identities from scratch.
My solution for reconnecting with myself is through creative writing. Finding yourself or even creating yourself, if you prefer, is a huge mission, and while I never expect huge breakthroughs, I do frequently discover what I think about something only once I have written it down.
It is these “eureka” moments that make staring at a blank screen so worthwhile. Working on my PhD I have found that there are different ways in which writing can help me to work out my feelings towards things.
When first writing about my illness experiences in my PhD programme I soon realised that if I did write about cancer I didn’t want to do it directly because I had already spent ten years writing about it.
Instead, my question became what else should I write about, which led to a bigger question, which was who am I besides being a cancer survivor? Thus, my exploration of my identity through writing began, and I soon found I was writing about cancer but in the context of all the other aspects of my life such as my home, relationships, holidays, television, music, or whatever popped into my head.
What I realised is that it isn’t just what I write about that helps me connect with my identity, but how I write about it. I do like to write some ‘nonsense’, for example surreal poetry, creating images that don’t make much literal sense but satisfy my need to play with words and experiment. This is all this part of my identity, and the style in which I write is a way to reconnect with myself, no matter what the subject is.
If you have also been thinking about how illness has changed your identity or made you feel like you have lost part of yourself, it may also help you to write – about anything!
Pick up a pen, leave your expectations and your internal editor at the door, and give yourself the time and space to be creative. You never know what you might discover about yourself.
The creative writing workshop was not recorded in order to protect participants’ privacy. However, if you would like to watch any of the other Big Bowel Event 2023 sessions you can do so here and I hope you will join us at the event next year.