TW: Discussion of Eating Disorder behaviour
I have a feeling this is going to be my rawest (pun intended!) post so far. Of all my differences, I find opening up about my eating issues to be the hardest. It really is the one that confuses me the most, the one that has a lot of interconnected aspects that need teasing out.
I’ve always been underweight. Always had problems eating, not feeling hungry, feeling too full. Some of my earlier memories of being bullied relate to comments about my size. “Runt” was the mildest of them, and the most common. And I’ve always hated how skinny I was.
Because of this, because of how I’ve always wanted to gain weight, and because of the stereotypes of girls with eating disorders, I’d never have considered that I had one. I knew it was whispered of me, but I was always quick to brush it off.
In 2011, I was diagnosed with fibromyalgia. I now know that the underlying cause is my Ehlers Danlos Syndrome. But at the time, I was determined to find a cure. I fell down the rabbit hole of gluten-free, then Paleo, then GAPS. That’s a horror story I’ll leave till another day. But, long story short, I ended up losing weight I didn’t mean to.
And then, I found my way to Your Eatopia. This is a science-based website dedicated to helping those with eating disorders to reach remission. It did not take me long to realise that my “eating issues”, my “weirdness with food”, and whatever other euphemism I wanted to use, was actually an eating disorder. An unusual one, which at the time would either have been described as EDNOS (Eating Disoder Not Otherwise Specified) or non fat-phobic/ atypical anorexia. The term ARFID (Avoident/Restrictive Food Intake Disorder) had only recently been coined at the time. I had an ‘aha’ moment, which I write about in a guest post here. ( Gasp! My name is mentioned! Anonymity doesn’t last long, does it?)
But then, in 2013, I got diagnosed with Ehlers Danlos Syndrome. And that set my whole recovery effort into a tailspin. Did I really have an eating disorder? Remember, ARFID cannot be diagnosed if a medical condition better explains the condition. Unless the food avoidance is greater than would be expected with that condition. Also, I had gone into recovery with the mindset that getting the eating disorder into remission would ‘cure’ my fibromyalgia. So, if eating more wouldn’t cure me, why bother? That mindset set me back into a hole I’m still trying to climb out of.
Right now, as well as the unrelenting nausea and fullness after eating just one bite, I’ve got intense pain when I eat. Either acid reflux or a hiatal hernia, or both. I’m having a gastroscapy in two weeks, to try to see what’s going on. The GI surgeon asked me an interesting question, one that no doctor, not even the gastroenterologist, had ever asked me. “Do you ever look at a burger and think, wow that looks great, I really am hungry for that.” He was reassured when I said “Yes.” It means that I do actually have hunger cues. And in fact, that is confirmed when I do the exercise with the notebook mentioned here. I can write down forty or fifty check marks in a day! But only respond to a handful.
It’s not just the fear of pain, the nausea, the physical discomfort. Those cause many EDS sufferers to not eat enough. But with me, there does seem to be something more going on. I look down at my plate, and I feel terror. I break out in a sweat. And I’ve no idea why. I’ve no thoughts in my head, except a big loud “No!!” And, when I don’t eat, I’m calm and free from anxiety. It really is anxiolytic. And I do think that reaction is a lot less common.
At the end of the day, I don’t think it’s that important whether my energy deficit is caused by EDS related gastro issues, or an eating disorder. Either way, I’m clearly not eating enough. Because it’s hard. So hard. The hardest thing I’ve ever attempted. And at the moment I’m just not strong enough. And admitting that is even harder.
Hopefully the GI surgeon will come up with some ideas. He seems like he cares, though he says I’m one of his more complex cases. He’s only ever had one EDS patient before me. But he’s clear that he hopes to at least stop things getting worse, and to help me gain weight.
So, there you have it. Explained as best I can, but still probably not well enough. It really does confuse the hell out of me. I’m not sure there’s much more I can write. Oh, ok, one more word: Milkshakes!!!
[ image of three milkshakes in tall glasses with straws. From left to right, the flavours appear to be banana, strawberry and kiwi, each with a brightly coloured straw and a piece of fruit in front representing the flavour. They are placed on a picnic table, with grass in the background and basking in bright sunshine. ]