What Fibromyalgia Taught Me About Fantasy: Or, Dragons are Real, Actually

Whatcha reading? by Stephanie Pui-Mun Law

When I was ten years old, I told the child psychologist who’d come to talk to me* that I wasn’t actually human; I came from another world and was just temporarily incarnated here.

I wasn’t really lying.

*As part of the latest round of custody battles between my parents

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When I was 14, my mother told me that none of the abuse had ever happened. She insisted I’d made it all up.

I’m still not sure if she was lying.

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When I was 21, the doctor told me that the pain taking over my body was all in my head.

He wasn’t lying either.

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What makes something real? What makes it true? The doctor and I both told what we thought was the truth. (I can’t speak for my mother – who the hell knows?) But is believing in something enough to make it real?

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I have fibromyalgia. It’s an incurable pain condition with lots of nasty details. But you can’t see it in a blood test or an x-ray, on a brain-scan or an ultrasound. It’s diagnosed by testing and checking for every other possibility, and when everything comes up negative, they write ‘fibromyalgia’ on the dotted line. It’s a fancy-sounding way for the doctors to say ‘we don’t know what’s wrong with you’.

(Don’t make that joke in a doctor’s office. They get grumpy at you.)

Open me up, and you won’t find anything wrong with me. It’s completely invisible. No one else can see it or detect it or perceive it at all.

So is it real?

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They believe in fibromyalgia because enough people have come forward looking for an explanation for similar-enough symptoms that the medical community accepts that something is going on, even if they can’t verify it in the way they verify everything else.

…Makes you wonder why we don’t believe in UFOs, doesn’t it? Thousands of people have come forward describing the same or similar-enough experiences re aliens or abductions, but we don’t believe them.

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I don’t know whether aliens exist or not. But I do wonder why a thousand people saying this thing is proof that it exists, but a thousand people saying this other thing does not prove that it exists.

Shouldn’t the burden of truth be the same for every question? Shouldn’t there be a set amount of ‘proof’ we need to accept a thing as true? And it shouldn’t it be the same every time?

It’s not, though.

Why is that?

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It’s pretty hard to define ‘real’, when push comes to shove. The Oxford English dictionary gives us the definition “actually existing as a thing or occurring in fact; not imagined or supposed.” Which sounds nice and simple, until I have to try to prove I have fibromyalgia and there’s nothing to say that I’m not imagining it.

Except for the thousands of other people who are describing the same thing.

But it’s not as simple ‘as other people saying it makes it real’, is it? Rumours can spread like wildfire, can be shared and believed by thousands of people, but that doesn’t make them fact.

It’s not as simple as saying ‘real is something I can touch’. There’s all kinds of things we can’t touch. Nobody can touch pain – you can touch something that hurts you, but that’s not the same thing. We can’t touch hunger or happiness. We can’t touch patriotism or faith or hype. We can see the effects of those things, the ways they interact with and affect the physical world, our bodies, our brains, our behaviour. But we can’t touch them.

I think we’d all agree they’re all very real, though.

So…is something real if it affects us? If we feel it? But there are so many things that don’t affect us. The dark side of the moon. The Marianas Trench. Microbes doing their thing on planets billions of light-years away.

There are stars that have died, that don’t exist any more, but we can still see their light.

So are they real, or not-real?

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Unless you have it (and I hope you don’t) or someone close to you does (I hope they don’t), then fibromyalgia might as well be fictional to you. If you walk past me on the street, you won’t see it. If you talk to me, you won’t hear it. If you inspect me, run tests on me, experiment on me, you won’t find it.

It’s as if it’s all in my head.

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What’s the difference, then, between fibromyalgia and fantasy?

(Other than the fact that one of them sucks, and one of them is brilliant and only sucks some of the time.)

Only I can experience my own fibromyalgia. But if you and I read the same book? Then we experience the same story.

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It’s not real. It’s only in our heads.

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But.

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A story can be experienced by many people; millions of people, sometimes. Sometimes even many people simultaneously: when people watch a movie together or read a book at the same time, or play Dungeons & Dragons together, that’s multiple people sharing an experience that every participant can verify independently.

Yes, our experiences may vary a bit – maybe you like this character more than I do, maybe I preferred that part of the story – but the core experience is the same. It may affect us in different ways, but the very fact that it affects us at all, the fact that it affects us both is…something. Isn’t it?

Does that make it real?

I would argue: more verifiably real than my fibro.

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When I read, the dragons are only in my head.

But they’re not, if they’re in yours too.

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What would it take to make you believe in aliens?

You’d probably believe if you saw one. If you experienced an abduction for yourself. Right? It’s very hard to argue that our own experiences aren’t real. Even if a thing is a trick, it still happened to you. You still experienced it. The experience is real.

We experience magic every time we read about it. And those experiences affect us – we have emotions, we daydream, maybe we even create fanworks. We walk away from a story a little different than when we started reading it.

How many parts of you are there because some story planted a seed in you? How much of your courage, your kindness, your hope, your stubbornness, your snark, your strength, your gentleness, did you learn from a story? How many of your idols weren’t historical personages or celebrities, but fictional characters? How much of the way you interact with the world comes from the stories that were told or read to you, or that you read to yourself? From the movies that mattered to you, that reached in and grabbed hold of something in your heart and didn’t let go?

I bet you’ve been shaped by stories at least as much as I have by my illness. I bet the way you interact with the world is determined by stories at least as much as my fibro determines how I interact with it. I bet you wouldn’t be you without the stories you’ve loved.

Maybe that other-you would only be a little different. Maybe a lot.

But they wouldn’t be you, would they?

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I can’t show you my fibro. But I can hand you a book and show you dragons.

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It’s all in your head.

So what? It’s still real.

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