The chronically ill spend our lives hiding. No wonder you don't see us now.

People with chronic illnesses of all kinds spend so much of our time and energy hiding those illnesses from the world at large. It's effective to varying degrees, with invisible illnesses being of course the "easiest" to hide. Or rather, the easiest for you not to see.

Ambulatory wheelchair users who push themselves to walk into a room and sit on a seat in the corner rather than move around that room in a wheelchair are keeping their illness—their disability—hidden from your sight. People living with lupus or CFS or fibromyalgia who put on their nice clothes and makeup and push themselves to "look normal" while meeting friends for dinner (well, now for Zoom sessions) are keeping their illness out of sight. (Etc., etc.) We hide our medications, our supportive devices (when possible), the circles under our eyes, and anything else we can.

And while we do this for ourselves, to protect ourselves from the truly damaging and scary ways some people respond to signs of disability or illness, mostly we do it for you. To make your life easier, we push our bodies and hide our pain. So that you don't have to do the hard work of engaging with our realities.

While we hide less from those with whom we are close, especially from those with whom we live, sometimes you're the ones from whom we hide more—because we know our pain will hurt you too. But that's, in this case, not the point.

People living with disability or chronic illness spend so much of our time trying to help the world pretend that our conditions don't exist, to come across as "normal," that is it really any wonder that now, when the world is battling a virus that's far more dangerous for those who are already ill, that same world simply...doesn't care about us?

The blissfully ignorant continue to minimize the importance of tactics like social distancing, the impact of passing this virus through a community, because you simply don't see us.

"Maybe it's better to let the virus kill who it will kill?" people ask in callous thought experiments, unaware that the people they're hypothetically killing off include their barista, their Uber driver, their coworker, their friend. Their family.

"Can't you answer the question abstractly, don't make it so personal?" my uncle who lives on the other side of the globe asked me a few days ago. "I refuse to think of you as that sick!" he then added multiple times.

I wish I could just refuse to be "that sick." But that's not the point either.

I am more than my illness (as are we all), but if you don't see my illness, you don't see me. And because you don't see that part of us, you can abstract the idea of "those with underlying health conditions" from the horrifying question of: "Don't you think this is too hard on us/the economy, so we should just let them die?"

Don't you think we should just let you die?

I am certainly guilty of keeping the reality of my illness (or to be more accurate: illnesses) from the world at large, inasmuch as possible. Though I've started to talk about it all more in recent years as my health has chewed up my life, I still keep most of my reality to myself, and I've spent decades putting the world at ease by hiding my conditions, my pain. Because I was taught, as are most of us, to prioritize putting you at ease. Not to mention the undeniable reality stated so well in Grey's Anatomy ep. 5x17 that "once people see you as sick, they don't see anything else."

And I am more than my illness.

But I am not separate from my illness.

I wish SARS-CoV-2 could sweep the world and take out disability and chronic illness without taking out the disabled and chronically ill.

See what I did there? This is one of those dichotomies that exist in the minds of the healthy, who think about the conditions but not about the people. (Because that's too hard, too depressing, too much of a downer...)

Frankly, even if the total number of those with chronic conditions was a thousand times less than it is, that death toll would be way too high.

But the thing is, we are everywhere. And we've gotten so good at hiding our realities that now to you, the healthy, we've stopped being real. So you grumble about your boredom, you ignore shelter in place orders, you moan about the media overdramatizing, and you curse the falling stock markets as if that's what matters and not our lives.

"Take the disabled if it means I can have dinner with my friends!" 

"Kill the chronically ill so I can see a concert!"

"Who cares about them?" you ask, in your minds or to our faces, forgetting that we're not a them. We're part of your us.

And we can't shelter you from our reality anymore. Now more than ever, we need you to open your eyes and stop denying our existence. We need you to shelter us.

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Writing with Aphantasia

I have aphantasia. Many of you likely don't know what that is, although lately it's become better known due to some popular twitter posts (like this one or this one). Basically it means I can't visualize things—at all. I know what things are, logically and conceptually, but there is no mental picture that goes with it.

Though I didn't know it at the time, aphantasia is why when we did guided meditations in theater camp, I couldn't entirely understand the directions to "picture yourself in a field." It's why I can (well, used to be able to) paint from something, but why I could never draw or paint something without a source I could see. It's why when I hit the point in math that required visualizing things, like a curve rotating around an axis, I just couldn't do it. (I actually had a wonderful teacher in HS who worked around this by showing me computer simulations.) It's also why I am absolutely terrible with things like directions, since I can't visualize anything resembling a map, or build a "mental" one from living somewhere and moving through the streets.

A few years back I learned that aphantasia, while relatively rare, is something shared by others. Sometimes having a name for something really helps, even if my experience of it hasn't changed at all. I have to memorize facts for every single thing I want to be able to conceptualize (roses have thorns; birch trees are white with dark spots; owls have big eyes; etc.). I bet for many of you, even that short list produced images in your mind.

Aphantasia also impacts my memory, because memories are so often tied to visuals or other senses. I recently learned (as in, minutes before drafting this post) that aphantasia is tied to a lack of "picturing" other senses. I hadn't actively thought about it before, but I also can't imagine a smell, a sound, a taste, or how it feels to touch something. It's pretty mind-boggling to me that other people can genuinely hear or smell something just by thinking about it.

Everything—even music—for me is filtered through logic and words. For example, I know if you slam a door, it's a loud, sharp sound, even if I can't hear it in my head. I had a lot of musical training (for someone who's pretty hopeless as a musician), which genuinely helps, but "hearing" a melody for me still means naming the notes in my head. Similarly, I know what a rose is, or that they come in different colors, or that a chocolate cake baking in the oven smells appetizing. But whatever the item or sense in question, I have to actively translate "imagine X" into an understanding of what that logically means. It never becomes a picture—just a conceptual understanding.

As you can imagine, this drastically impacts my writing. I can't picture my characters, their movements, the spaces around them, or what they're smelling, tasting, hearing. I do know what they're feeling, in the emotional sense of the word (not in terms of touch). I know how they speak to each other, what they want. But everything else I have to conscientiously layer in, which is also why visuals (and other senses) are so rare in my work.

Personal experience and research (hooray for the internet!) help. I often look up pictures of settings such as bars, hotels, or cityscapes, even outfits and furniture. I sketch out very basic layouts of apartments/homes so my characters don't accidentally walk through walls, which has definitely happened in drafts because I can't visualize a space. Sometimes I'll find shortcuts like looking up an apartment building in the right area and using their floor plans.

It's possible this is part of why I'm such a slow writer. Everything other than emotions and dialogue, including figuring out gestures and mannerisms, requires even more intentional consideration. I don't see any of that. It has to be pieced together.

Another author wrote about his experience writing with aphantasia here, calling it a "patchwork." Though my method is in many ways different from his, that notion of taking pieces from here and there and bringing them together to add in everything outside the minds of my characters is pretty accurate. This is why I may sometimes write Urban Fantasy (like Mortal Musings) but no epic fantasy, which would require creating a full new world from my imagination. I suppose I could use the patchwork method to meticulously piece together an alternate world, but keeping my stories rooted in our real word means not worrying about creating and staying consistent in an environment that I can't imagine.

Even though I know this is a weakness to watch out for, sometimes those external pieces get overlooked while drafting. With Summer Seduction, it wasn't until I was revising that I realized I'd never described Tracy at all (don't worry, I added that in). The only reason Jeremy was described is because I was literally going off the cover image.

Hypothetically I could find pictures to use as a foundation for every character and setting, but visuals are not what inspires me to write, and so that's unlikely to be something I will ever do. My stories are built on the internal experiences of my characters, the language people use with each other, how they feel about each other, which I can imagine, even to the point of feeling it myself. Everything else is deliberately, painstakingly sprinkled in to help flesh out that external world, but it's not the primary focus of my writing.

In some ways aphantasia does feel like a disadvantage. If I saw my stories play out in my head like a movie, I would probably be able to write faster, and perhaps the end result would be better, rooted in sights and smells and the physicality of my characters in a more significant way.

But the aphantasia isn't going anywhere. So my stories will continue to be rooted in the emotional side of my characters instead. Still, I'll keep trying to add all those branches, leaves, and flowers on top, because I understand the story remains incomplete without them. After all, I experience the outside world, thankfully with all five senses. I just can't picture it.

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Want to see where you fall on the visualization scale? Take this (fast and painless) test: https://aphantasia.com/vviq—then share your experiences in the comments!

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