Autism Spectrum Disorder, Fibromyalgia, and Invisibility

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I’ll never forget the moment I realized something wasn’t quite right. I sat with one of the few people in my high school I felt safe enough around to call “friend,” surrounded by the sound and movement and color and sheer overstimulating white noise that was high school. Watching other kids move around so quickly, unplagued by pain and overstimulation and exhaustion and confusion, my long-standing frustration hit the ceiling.

I took all the words that had been hiding under my tongue and forced them out. I said, “I don’t understand where everyone gets their energy. I look at them and they seem like they’re always awake and alert and none of this noise bothers them. I’m almost always overwhelmed, and I’m always tired and in pain.”

My friend turned to me with a face full of genuine concern and said, “Really?”

With that one word, that one look, it hit me that my experience really was abnormal.

Until then, I’d assumed I was lazy. Weak. Oversensitive. By confessing to my friend, I’d been hoping to hear something like,Oh, we all feel like that. High school makes all of us tired. No one likes noise. Socializing is hard for everyone. You just need to try harder.

It would have meant there was an easy answer. It would have meant the problem was me, that my struggling was easily overcome by sheer force of will. It would have meant bootstrapping myself until I was functioning at full capacity, because that’s what we’re meant to do, right?

In my teenaged eyes, everyone else was running a marathon with ease, looking at me with confusion while I struggled to make one lap around the track. Surely, I just needed to push harder, run longer, build up my endurance. That’s what I’d believed, what I’d been told. That’s the narrative I’d learned from countless stories, lessons, motivational posters.

Instead, with my friend’s one-word puzzled response, I knew: Something in me was different. Not just lazy or weak, but fundamentally different from the kids around me who had so much energy and easy enthusiasm that they lost me in the fray.

Both physical and mental health care and awareness being what they are, I didn’t find answers until well into my adulthood.  “Asperger’s Syndrome,” they said (though the DSM-V now categorizes this as autism spectrum disorder). “Somatic sensitivity comes with the territory. Of course you can’t figure out how to befriend your peers—you’re running different brain-software on different brain operating systems. You need a cross-platform piece of communication software that you can share.”

“Fibromyalgia,” they said. “Your muscles and joints are on fire, your body is fatigued, your sleep cycles are shot, because you have this thing for which we have a name. The pain and fatigue aren’t just normal byproducts of living; they’re symptoms of an invisible disability. And we have things that can help alleviate the severity of the symptoms. We can help you structure your life in a way that will let you seize the good days and rest on the bad days, because you will have both, just as you always have, and it’s okay.”

“You are okay,” they said.

“You are allowed to be in pain,” they said.

“It’s not all in your head,” they said.

Strangely enough, cupping these labels in my hands, I finally felt not-broken. I felt like I was allowed to exist exactly as I was. I felt seen for the first time in many, many years.

That feeling of not-brokenness comes and goes, but the diagnoses helped tremendously. They were, and are, freeing. They’ve given me permission to be who and what I am. They’ve given me permission to have the brain that I do, the body that I do. That doesn’t mean I don’t strive to overcome the disparity between myself and the expectations of the world around me; for me, it just means that the disparity isn’t the result of my obstinacy or laziness. It’s just a disparity.

It just exists. I just exist.

I am disabled. For me, that knowledge is empowering. I wish I could visit my teenaged self and tell her that it isn’t all in her head, that there’s a reason people found her social awkwardness frustrating, there’s a reason loud auditoriums and shouting kids made her want to run away, there’s a reason she has the physical tics she tried so hard to suppress, that there’s a reason she’s in pain and exhausted all the time, that there’s a reason she’s trying not to cry in History class because sitting up nearly made her pass out from the shooting pains in her neck, back, hands, and legs.

I want to tell her she’s disabled, because it would have changed her life nearly twelve years early. She would have given herself permission to not berate herself when she didn’t understand social cues. She would have given herself permission to stand up for herself when her abusive family member gaslighted her about her then-undiagnosed autism spectrum disorder. She might have even given herself permission to stim when she needed to, instead of feeling shame that the impulses existed at all.

She would have had opportunities to thrive that were hidden from her out of ignorance.

This is why we need a culture of awareness. I can’t go back and tell my teenaged self these things, but I can live on her behalf. As a diagnosed adult, I can tell people, “No, I can’t go out with you—I need to rest today.” I can tell people that I’m on the spectrum and what that means, so our social expectations are on the same page. I can tell someone when sensory stimuli are too much and I need to leave.

I can use all of this incredible, wonderful knowledge to cultivate a life full of relationships and work and hobbies that give me room to exist as a disabled person.

That is empowering. I hope the teenaged me, somewhere deep inside myself, feels cared for and seen in a way she never did in high school. I hope the kids in high school today are being given the chance to thrive I never had. And I hope they have the chance to read stories featuring kids like them, human beings like them, who aren’t conceptualized as broken. I want them to have a different narrative than the one I was given.

They deserve it.



About Author

Jacqueline Koyanagi

Jacqueline Koyanagi is a science fiction and fantasy author who lives in a landscape made of pages and ink and words, howling with her dog between chapters, chewing the sky and picking stars from between her teeth. Her debut science-fantasy novel, Ascension, is available in stores and online booksellers, and she also has a piece in Haikasoru's Phantasm Japan.

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8 Comments

  1. This is so great! I have Postural Orthostatic Tachycardia Syndrome, which is very similar to Fibro, and I went through that same experience, thinking that everyone felt like me, but that I was stupid and weak and lazy–that I just wasn’t trying hard enough, that I needed to be more positive (difficult when I was also suffering from undiagnosed depression). I was born with the very mild version of POTS, and luckily for me, it only took fifteen and a half years, at which point my condition worsened dramatically, to be told that no, I wasn’t normal and it was okay to be tired all the time.

    • Oh, gosh, me too – plus I’m 95% certain that I have Asperger’s (based on a diagnosis of we-don’t-know-what’s-wrong-with-her-but-it’s-not-this-other-thing I got as a kid, before Asperger’s was commonly dxed, and also based on the way girl-socialized children tend to present), and I’m positive that the depression I’ve suffered since a very young age is a result of the dysautonomia and ASD combination.

      It’s great to know that it’s not just me being lazy or whatever (even though it is a little bit, probably), but I wish people would stop telling me that there’s nothing wrong with me, just because of the invisible nature of the disorders means they don’t see me fighting to appear normal. I know they mean well, or are trying to keep me from fixating on “I’m messed up” and thus doing the self-fulfillment thing, but it’s super frustrating!

      —-

      I’m really looking forward to ASCENSION now, and am pre-ordering the ebook! The description of Koyanagi’s stories as featuring “queer women of color, folks with disabilities, neuroatypical characters, and diverse relationship styles, because she grew tired of not seeing enough of herself and the people she loves reflected in genre fiction.” makes me cheer a little bit. 🙂

      Thanks for this post, and for Stephanie Burgis linking to it on twitter, so that I have now discovered the blog!

  2. I got really excited about your post and reblogged it, but it then occurred to me that I should ask first 🙂 May I reblog this on my Naropa blog? It’s currently saved as a draft, so it’s not actually up yet.

  3. Hey Jacqueline, A friend of mine tapped me as to your post. I taught special ed/biology for years and miss it incredibly each and everyday. I stopped after neurosurgery complications. I have trigeminal neuralgia and a huge dose of ADHD. Like you, for years, I was told if I tried harder, got over my laziness in letting things slip past, then things would get better. That attitude of wanting to put people into convenient cubbies is what made the true me disappear in trying to become another version. I agree wholeheartedly with you that knowledge is power and to better understand ourselves permits us the key to escape the veils and walls that blind if not bind us. I found your story inspiring because now, I am somewhat back to being invisible with a condition that has left me highly sensitive to all chemicals, severe headaches and facial pain (undiagnosed for years), and the inability to go be out in public for long stretches at a time (due to simple things like perfume, dry sheets, cleaners).
    Writing has provided a window, allowing me a way to reach within an over active imagination that for years was also deemed part of my flighty problem of inattention. Thank you for your post, sharing your trials, and how learning freed you toward acceptance where it isn’t necessary to fit the mold. Actually smashing that darned thing should be a goal everyone strives toward in self-actualization. Wonderful insight. Namaste.

  4. Pingback: An Interview with Ascension Author Jacqueline Koyanagi |

  5. I’m so happy to see this article on this site. I, too, have fibromyalgia, along with OCD, and my experience was quite similar, although for me the fibromyalgia was a sudden onset in tenth grade after I got H1N1, so I knew right away something was wrong. With the OCD, it took much longer to figure out since I’ve had it almost my entire life. OCD has some weird similarities to autism, too — ever since I got diagnosed and learned how to manage it, I’ve understood my youngest brother, who has autism, a lot better. I can see where his logic is coming from and what it is that’s making him upset because I’ve had to fight my own brain too.

    So yeah! I agree with your sentiments here and thanks so much for posting this.

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