Tag: coeliac disease

22/09, Doloro (TBA Readalong)

You will be relieved to know that this is a short post and you get a day off tomorrow, since nothing in The Butterfly Assassin takes place on 23rd September. (For Isabel, it’s a Sunday, so a quiet day amidst a school-based schedule.)

On the 22nd September, however, Isabel wakes up in the middle of the night, in severe pain, and wonders what to do next. This is the first couple of pages of Chapter 7, for those keeping track. For the first time in this scene, Isabel attributes her symptoms to the probability of poison, and not to anxiety or general sickness, and we begin to get a sense of where the plot is going…

There is no wound, no knife, and there are no weapons that can protect her from an enemy that’s inside her.

Poison has always been a plot point in this book, even back in the earliest drafts, but it’s changed significantly over time, in terms of the nature of the poison and the symptoms it causes, as well as its purpose within the plot. When I wrote the first draft back in 2014, I had never knowingly been poisoned. By the time it was published, I was describing it jokily as “OwnVoices for poisoning”. What changed?

Well, in 2015, I got diagnosed with coeliac disease, an autoimmune condition which means I can’t eat gluten.

Some coeliacs are largely asymptomatic. They don’t experience noticeable symptoms when accidentally ingesting gluten, although that doesn’t mean there’s no damage: it can cause nutrient deficiencies and malnutrition, and increase the risk of bowel cancer. Many are diagnosed because of persistent, severe anaemia due to malabsorption of iron, which was also true for me – I complained of fatigue, said I thought my anaemia was probably returning, and mentioned that I’d stopped taking iron supplements due to stomachaches. The doctor ran a routine test for coeliac antibodies just in case, and discovered my immune system was halfway through setting itself on fire, with an antibody count of 216. (Around 20-30 would’ve been enough to suggest coeliac disease.)

But I hadn’t had significant symptoms before then, so it was a surprise, the first time I accidentally ate gluten after diagnosis and a couple of months of a strict gluten-free diet, to find myself in the bathroom wishing for death.

It turns out, when your immune system is on fire at all times, you don’t notice the reaction when somebody throws a bit of extra fuel on the pyre. But once you’ve got the fire under control… yeah, after that, the smallest thing sets it off like a flamethrower.

These days, I have to avoid all traces of gluten. “May contain wheat” is enough to mean I can’t eat something, just in case. I have to have a separate toaster to avoid crumbs touching my bread, because they would make me sick. I have separate utensils, especially wooden spoons which are hard to clean thoroughly, and I essentially travel with the kitchen sink to make sure I can safely prepare food when I’m away from home. I have an extensive list of additional dietary restrictions, which makes things extra complicated, but it’s only the gluten where the tiniest trace will make me sick.

I don’t get glutened often, because I’m very careful. But when I do… it sucks. And I drew on that experience for Isabel.

There are no weapons that can protect her from an enemy that’s inside her. Writing as someone with a couple of autoimmune conditions and chronic illnesses, plus chronic pain and fatigue… this, here, is one of the main things the book is about. That terrifying loss of control that comes from realising your body is turning on you.

OwnVoices for poisoning.

I know that this loss of – and fight for – control over your own body has been something that’s resonated with disabled and chronically ill readers, because they’ve told me so. But it probably wasn’t clear from this first glimpse of the poison that that was going to be such a major focus of the book, so I’d like to know how youse reacted to this scene. Did you think, “Oh, she’ll be fine, YA books never kill off main characters”? (lol) Or did you think, “Oh, shit, how’s she going to get out of this one?”

Leave your answers, or any other remarks, in the comments, and I’ll see you back here in a couple of days for the rest of this chapter.