When is it right to write? When is it right to share?

In the early years of my writing life, which began in 2000, a year into major life changes due to illness, a friend suggested that I should write about the experience. Maybe a magazine article; people might be interested. At the time I was writing poems full of self-pity and anguish. I couldn’t physically write for long, and the thought of a long article mining my pain and difficulties was beyond me. More than that, I wasn’t ready to write it. When you’re in the maelstrom it’s enough to cling on to the wreckage, to survive, without processing what’s going on and turning it into art.

Some eight years into the illness, my then partner, now husband, set up a website for me, an earlier version of this one, and I started blogging about living with chronic fatigue syndrome. There was a lot reaction to the posts, not all of them welcome. Let’s just say that I am allergic to offers of miracle cures, and if one more person suggests a drop of lavender on my pillow as a cure to the sleep problems I have endured for 14 years… There were also snide comments on how I seemed to be doing a lot for someone who is supposedly ill, as if I were making it up. I don’t need to justify or explain, but whilst it may appear that I am doing a lot, I work in small chunks of time, often only 20 minutes a day, and take rest in between.

When my site was updated about a year ago I decided to ditch the chronic fatigue page, to make the site more about my poetry and stories, and blogging on whatever took my fancy. Living with chronic fatigue syndrome has only come up once, when I wrote a post on living through the harder days.

14 years after my friend’s suggestion to write an article, I wrote the script for a talk I gave to Kent Writing and Wellbeing Network. A member of the group looked it over, and thought it was publishable, so I pitched it to a couple of magazines. It was taken up by Writing in Education, the journal of the National Association of Writing in Education, and published in Spring 2014.

Here is an extract:

It was a time of great loss – of work, health, relationships, financially and most of all a loss of place in the world. I had defined myself by my work, particularly during the years that my marriage was not fulfilling me, and that was gone.

There was a paring down of friendships. Some had liked the Maria who danced at the front when we went to gigs; they could not cope with who I had become, and neither could I cope with having lively, chatty people around me. Visits and phone calls exhausted me. My voice was weak, and even holding a phone was too tiring.

One of the greatest losses was that of words. I couldn’t read for long, or watch a film without losing concentration or falling asleep. I struggled for the right words to describe things I saw – everyday words.

It felt risky, particularly exposing the rifts between me, members of my family and close friends from whom I decided to separate during my illness. I took shelter in the fact that none of them were likely to read the article or hear me speak on the subject.

Maria prepares for her talk: ‘Low Energy High Creativity: Discovering Writing through Illness’ in the yurt at A Few Wise Words

In April 2014, I gave a talk at the Few Wise Words festival in Canterbury. The angle was how discovering writing has helped me to survive the enormous changes in my life as a result of my illness, and how, without exaggerating, writing saved my life. The audience was invited to ask questions, to share their own experiences and to engage in writing exercises. By revealing ourselves we make ourselves vulnerable, and my story liberated others to share theirs.

As the talk ended, a queue formed in front of the small dais where I sat. I felt like some kind of guru as people revealed their own experiences of illness and family difficulties. The most poignant was a woman who asked if writing would help her terminally ill daughter-in-law. She had so much anger, I was told, and was struggling to express it.

Sharing this kind of thing comes with responsibilities, to the people around me affected by my illness, by my decisions to separate from family and friends. If I had written too soon, I would have been full of blame, and I am not blameless. I wrote letters, told people just what I thought of them and why I didn’t want to see them. I was not tactful. I discovered that most people would prefer not to be told ‘the truth’ as I saw it. There was a time when I felt ashamed of those letters. In my defence, I was chronically sleep-deprived: 18 months of sleeping no more than 3 or 4 hours a day – it sends you crazy; you can’t tell the difference between waking and dreams; I was verging on mania. Someone who had been through mental health difficulties said to me, ‘Those letters saved your life.’ That’s probably true. I do, however, accept responsibility for the hurt they caused. Apologies were sometimes as unwelcome as the letters. For many, things are better left unsaid. I can understand that, but for me leaving things unsaid, unwritten, means illness and living an inauthentic life. But what I have learned is: you don’t have to share what you write; the act of writing is enough in itself.

Back to the queue of people waiting to talk to me after the Few Wise Words event, there was a responsibility for me to listen, to empathise, but not offer advice. My way through was messy, unplanned. My way may not be another person’s way. Who knows if the terminally ill daughter-in-law would find writing helped her deal with her anger? All I could say was that writing is not for everyone, but if she did write, she might want to decide what would happen to her journal after she died. The mother-in-law could offer to do as the woman wished with it, to destroy it, if that’s what she wanted. The writer must be free to write without awareness of a reader.

There is also a responsibility to myself, to be authentic in my writing, whether I share it or not, and to protect myself from others’ reactions to my story. To be empathetic, but not to listen too long and take on the emotional baggage of other people’s stories. To recognise that I need to protect my health, my limited energy, to repel those that offer miracle cures. To remember those things that help me and those things that don’t. And to keep writing.

Wordsworth described poetry as ’emotion recalled in tranquility’; the same goes for writing an article, preparing a talk, sharing experiences. Written too early, shared too early, the anger and blame of my letters and poems showed through and hurt others. 15 years on, experience is filtered through self-knowledge and seeing things from other people’s viewpoints. There are still some people I would not like to read the article I wrote; nonetheless, I had it published. Here is a writing prompt from the article: