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This lived experience perspective has been contributed by Ferris Knight (they/them). Ferris is a queer and disabled writer, producer and advocate from Melbourne.

Rumination - a lived experience perspective

Sometimes you know when something starts. It’s this seismic shift between before and after, where something changes and your life won’t be the same again. Other times, you don’t recognise the significance of something and cast it from your mind.

I was thirty when I was unexpectedly diagnosed with an eating disorder I’d never even heard of before. I was seeing my gastroenterologist. He’s a lovely man my mother calls ‘prom king’ because the first time we saw him he was wearing a pale blue suit and had his blonde hair styled.

I have had multiple chronic illnesses for a long time now, including dysphagia (trouble swallowing) and stomach pain, so we knew each other well. I’d come in to get the results of my recent manometry (a swallowing test) and to check in since I’d been sick again recently, throwing up dramatically like a cartoon character. Or at least that’s what I thought it was. Instead, he told me I had Rumination Disorder, and instructed me to breathe into my diaphragm. It was only later, when I started to Google, that I understood it a bit better and realised that I’d had it in one shape or form since I was at least a teenager, if not earlier.

Rumination is different to throwing up. For one, you aren’t actually sick or nauseous. What’s coming up is undigested and doesn’t contain stomach acid, so it still tastes like food. It also doesn’t usually hurt but can, at least for me, depend on what I ate. I compare it to a hiccup, except with weight. Sometimes I know it’s going to happen, and sometimes it’s a surprise. It’s hard to explain, but you know when you have a feeling you will sneeze? It’s similar, except knowing you’re going to regurgitate your food.

Telling someone you involuntarily and randomly regurgitate your food is difficult though. I felt quite disgusting, not being able to do something as basic as keep my food down. I’d always just swallow it again, hoping to hide it from those around me, which was just something else in the ‘gross’ column that prevented me from talking about it. I never told anyone or asked for help. Even when talking to doctors, I would omit anything relating to it. I was so ashamed that I hid it from the people who could actually help.

I remember episodes when I was a teenager, but I don’t remember when exactly it started. If I hadn’t thought that day that something else was wrong that day, I probably wouldn’t have said anything still. I also just didn’t want to be any more of a bother—I could handle this, compared to a lot of the other chronic illness things I was going through, so I prioritised those symptoms and thought I’d just have to live without getting to eat pasta by myself.

A few months after my appointment I was in bed, studying and eating bahn mi. I didn’t have that feeling, so I thought it would be fine, but I had an episode. Bread really hurts, and my ribs started hurting quite badly as a result. I didn’t know if the two events were related, and I finally started to do some proper research into Rumination. I found the EDV website and saw Rumination listed.

I was older and queer, so I didn’t fit the stereotype (though we are discovering queer people are at higher risk). It also didn’t seem like a ‘real’ eating disorder.

The first time I told someone, they were surprised that that was actually an eating disorder at all. Unlike bulimia for instance, the throwing up is accidental, and has nothing to do with how you feel about what you ate or just how you feel in general. It isn’t changed by if I’m happy or sad or stressed. But after some reflection, I recognised that it had altered my relationship with food. When I feel an episode coming on, I alter what foods I eat. I will only eat certain foods when I’m with people in case I have a bad episode. It’s also damaging my body in similar ways to how bulimia can, such as damaging my teeth. I’d also never thought of the psychological aspect, because it wasn’t affected or made worse by how I felt, but instead it influenced how I felt. Its made me fearful and anxious and ashamed for so long now.

Getting a diagnosis brought some relief. The first step is knowing that there’s something wrong and what that is. I wasn’t just inexplicably broken, and there was something I could do about it. And I wasn’t the only one.

So, at thirty, I’m starting recovery.

Contributed by Ferris Knight

 

Need help?

Eating Disorders Victoria has put together a step-by-step guide take if you are concerned that you may be experiencing anorexia. It also covers how to talk to family or friends about what you’re going through. Remember that you have the best chance of success if you include people you trust on your journey.

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