Ten years ago, I was working as a campaigner for social and environmental justice. I had two small children and I prided myself on being a hands-on mum. Women can have it all these days!

Women can have it all. But not me, not in this body. Already constantly tired, I started to get ill all the time. I have Chronic Fatigue Syndrome (CFS) which I prefer to call by its original name ME and which has no “cure” and not much help from conventional doctors.

Working was no longer possible. From my bed I researched my illness, slowly charting myself back to some level of health. After a while, I found writing was something I could do. I loved the books my kids, by now pre-teen, were reading – so full of adventure and promise – so why not write one, I thought! How hard can it be?

I wrote when I felt like it, no pressure when I didn’t. And over the course of five years a full-length manuscript emerged. A magical realist middle grade story set in my homeland of North Wales and full of so many pieces of me big and small. By the time the pandemic hit, I had clawed back a fair amount of health. I had also failed to get an agent for my book and was feeling, if not defeated, certainly disillusioned.

I saw a post by Giovanna Iozzi on Facebook: “Come and do my memoir writing course, we’ve moved online”. An in-person course in a different part of London would not have been possible for me, but the switch to online life brought possibilities. I’d written a few blogs about life with ME and found it cathartic and interesting and so I thought why not?

Fast forward a couple of years and I’ve done Giovanna’s courses followed by many rounds of Alison’s Prioritise where, on a steep learning curve, I learned how to shape a story and to think about my reader. I didn’t have ambitions to write a memoir, but it turned out I had a story to tell, not just about myself but also about the sexist history of ME and what a bad hand it has been dealt by the medical profession.

Now, with the massive help of Prioritise, feedback Fridays and writing hour Thursdays, I have a full-length manuscript ready to send out to agents.

I’m also now painfully aware of the many reasons my children’s story never snagged an agent! Turns out it’s not so easy after all.

Getting a memoir published is difficult. I don’t hold out a lot of hope, but I am determined to try and, if I fail, to self-publish. Chronic illness can be a lonely business and if I can reach out to just a handful of other people, I will be happy.

This extract from my memoir is from before my diagnosis. My sinuses are perpetually infected and I need surgery but the waiting list is 18 months long. Taz is my partner.

Extract from a memoir

“I could always go private?” I venture in a small voice.
Taz raises his eyebrows. “How much does it cost?”
It costs £3,172, that’s how much. £3,172 and a sacrificing of our principles. We hold a little ceremony for them, light a candle for socialism, for the welfare state, and then blow it out suddenly and violently leaving nothing but darkness, smoke and a trace of dirty soot.
Not that we have £3,172.
“I’ll pay,” says my mum before I even ask. “It’s worth it if you can get back to work. It’s a lot less than 18 months salary, anyway.”
“Thank you Mum, thank you.” I have tears in my eyes. Not unusual these days to be fair.
“I only wish I could do more.” Her constant refrain.
I ring Dr ENT’s private surgery. They can do it the week after next. I can be booked in straight away because I have already seen him in his NHS surgery. I hang my head in shame: am I the worst kind of hypocrite? I have used the NHS as a springboard for my private treatment. I should have lit a bigger candle.
“Great news!” I tell my colleagues. “Surgery soon and then hopefully I’ll be back.”
I’m convinced by now that Dr. ENT is wrong about the fatigue and constant illness. This surgery will solve not just my sinus problems but many of my other symptoms too. It must be the snot which is dragging my whole system down, the constantly infected snot.
“Oh! So quick!” they say in mock innocence.
“Yes. I’m going private. I can’t afford not to. I don’t have money to live on if I can’t work.”
I mutter about winning bread. But the more I talk the guiltier I am.
“Of course, of course,” they say, and I hear the thud as their estimation of me drops a yard further.