Wait, That's Not Normal?
Or, why it's important to talk to people about how you experience the world.
I’ve been thinking a lot about how we assume that whatever we’re experiencing is normal because it’s all we’ve ever known. It’s like that joke about people realizing they’re allergic to food only after trying to commiserate with a friend over how itchy it makes their mouth. Or when I mentioned to my class that I sneeze everytime I eat a mint, expecting nods of understanding (I was, instead, mocked mercilessly). For me, this kind of moment has happened a dozen or so times, in doctor’s offices or while talking to friends or, admittedly, on TikTok (more on that later).
Sometimes it’s been about something innocuous, but it’s been related to my health a handful of times. As much as anything, this kind of experience is a testament to the importance of speaking up about your experience either to help someone have that moment or to have it yourself
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Migraines and Visual Snow
Some background: I got my first migraine in third grade. It wasn’t too much of a surprise, since they run in my family. I had migraines and headaches throughout the next few years but they got more and more infrequent— until my TMJ got worse in college. Then, they came back with a vengeance.
To make the rest of a long story (which I will surely tell in more detail another time) short, I took a new medication and got a side effect that is rare but not unexpected, which caused sensitivity to light, flashes of light in my vision, and other visual disturbances. It got worse and worse the longer I was on the medication but I had to wait until my semester of grad school ended to try and get off of it. After that, the symptoms should have stopped but, while they did get better, I still had the same issues.
After not getting answers from the doctor who had prescribed the medication, I went to see a neuro-ophthalmologist.1 Armed with visual depictions of what I was seeing, I tried to explain all the weird phenomena I was experiencing: flashes of light, after-images, weird issues when I wore black and white stripes. A bout of auras over the course of a week the previous month that would make my vision so bad I had to lie down and wait for them to pass (though, mercifully, they didn’t involve any actual migraine pain). After a barrage of tests, it all came down to a few questions.
“When you look at the sky, do you ever see dots floating around?” he asked.
I thought about it for a second and I realized, yes, for my entire life. And also, that I never knew that that wasn’t normal.
“When you look at that white wall, do you see it as a plain white wall or do you see colored dots?”
“What do you mean?” I asked. “It’s just a white— oh.”2 No, there were colored dots swirling all around. As if I could see the atoms that made up the wall. This was very confusing to my mom; the doctor, however, also had visual snow, which was the diagnosis, and could commiserate.
Looking back, my whole life I’ve had symptoms of visual snow, just to a smaller degree. Sometimes I’d look at objects and think about how weird it was that they all had definite edges. I think it’s because I saw those moving dots all the time. And every time I flew in a plane, I’d look out the window and see spirals of sparkles. Now, I had these big words to name different things that I was dealing with then and now: palinopsia, nyctoplia, photophobia, entoptic phenomena.3
“You also said you get headaches?” he asked.
“Yes— they were pretty frequent last semester. I’d have to lie down in the dark and do nothing.”
“How long do they last?” he asked. “Does lying down make them better?”
“Not really. They last a while.” I don’t know if I told him this, but sometimes they went on for days.
“It sounds like you’re having migraines,” he told me.
No, I thought, of course I’m not. I’ve had those before, I’d know if I was. The auras I had were part of the visual snow. And then: holy shit, those were totally migraines.
So basically, while I’ve always had visual snow syndrome, the medication had kicked it into overdrive. And maybe I never would have known that it had a name, and I never would have known that people look at white walls and only see white. And without the medication, maybe it never would have gotten worse, which would be great, since right now the white screen of this document has dancing dots on it. But knowing that it’s benign— it’s just my poor little brain over-perceiving light— is a relief. When the snow is bad, or I wish I had a dimmer switch for the whole world, or I wear stripes and see moving lines of color in the bottom of my vision, it’s really comforting to know exactly why those things are happening. And it doesn’t have a cure, but my migraine glasses help, and I’ll take what I can get.
ADHD
There are a lot of things that are shitty about TikTok: ads, TikTok shop, trad wives, alt-right pundits, multi-part stories that could have been told in a single video (these are, obviously, not on the same level of suckiness).4 One thing a lot of people have complained about is how many young people have self-diagnosed themselves with ADHD after seeing posts about it on the app.
Maybe that’s valid. Maybe there are people who see a video or two about ADHD, say “wait, I experience that too,” and boom, they claim that diagnosis. Maybe, like the media says, some of those people have just trained their attention span to be shorter by consuming smaller and smaller pieces of content on that very same app.
Or— and I’d argue this is far more likely— maybe they see a video describing an aspect of ADHD and they think “wait, I experience that, too,” and for the first time, they feel understood. And they watch another video, and another, and another, and their understanding of ADHD evolves from the simplistic definition they learned growing up into a clearer image of a complex diagnosis. Maybe because they aren’t hyperactive or because they can focus intensely sometimes they thought they couldn’t possibly have ADHD. Maybe (and again, very likely) they were raised as a girl and thus it went undetected.5
We can debate the validity of self-diagnosis until the cows come home. We can talk about how maybe people shouldn’t learn about neurodiversity from a social media app where misinformation can run rampant. We can talk about how dangerous it is that this is where a lot of us learn new things about conditions we are diagnosed with, because our doctors don’t know enough or fail to fully inform us, and the US government is trying to ban it. All of those are conversations worth having, but they’re not the conversation I’m having right now.
What I am talking about is my experience, which is exactly what I described above. I was scrolling on TikTok and I saw a video about executive dysfunction and I felt immediate relief: I’m not a bad adult, I’m working with systems that weren’t built for me. Then I learned about time blindness and sensory-seeking and hyper focusing and task paralysis and suddenly, my life made a bit more sense. It was a revelation to learn about how some people with ADHD see every task as each individual step it takes to complete it, which makes even the smallest chores and actions like doing the dishes and cooking feel ten times harder. What had the most impact for me was learning that habits don’t work for me because I have to make a decision every time I do something.6
And here’s what people don’t understand: I didn’t come away from this thinking I have ADHD. I came away from it thinking I might have ADHD, and that I should do more research, and that I should talk to my doctor (which, for the record, not everyone is able to do, which is why self-diagnosis is valid).
And guess what? I didn’t even have to ask my doctor. Ten minutes into my first meeting with my new psychiatrist, she asked me if I thought I had ADHD.
“It’s funny you should say that,” I told her, “because I’ve been wondering about that recently.” And I told her all the reasons that I thought the diagnosis fit.
“Do you want to get tested for it?” she asked.
“What would be the benefit of that?”
“With an official diagnosis, we can try and find a medication that helps.”
I shook my head. “I probably can’t take those because of my POTs.”7
“Right, of course. Well, I think it’s safe to say you do have it. If you want to get the testing done in the future, let me know.”
I haven’t done the testing because having these words to explain what I’m dealing with, and knowing that there are other people out there who have the same struggles, is comfort enough for me. Maybe if I need formal accommodations in the future, or we decide it’s worth trying medications, I’ll do it.
I can see how it went undiagnosed for so long, though. I found ways around most of my issues because I had to: I started getting places early and waiting there so I wouldn’t be late. I started wearing jewelry so I’d have something to fidget with. For the same reason, I sometimes brought a knitting project to class in high school and college. I stopped trying to use planners and instead I change whatever system I’m using at a given time to suit my needs.
Now, when I identify a problem that I think is related to ADHD (currently task paralysis is really kicking my ass), I know how to find answers. I can try existing solutions and accommodations and hacks and work arounds before resorting to inventing my own. Maybe I would have stumbled onto this diagnosis at some other point. And maybe you’re thinking, “Well, wouldn’t that doctor have still asked if you thought you had ADHD?” The issue with that is, if I’d still had the outdated understanding of ADHD I’d had before that TikTok deep dive, I would’ve said no.
Hyper-Mobility
I grew up in the midwest but we spent a lot of time in the mountains in Colorado and Utah when I was a kid. As soon as they could, my parents got my sister and I on skis. When we could handle it, we’d ski with them on green runs8 in our puffy little snow suits and our kid-sized goggles. The easiest of ski runs (aside from the bunny hill, which is where learners practice).
The good thing about learning to ski when you’re small is that you don’t have far to fall— which you do, often. But I didn’t like falling. It didn’t feel good and the snow made me cold and dampened my snowsuit. So instead, I’d sit my little booty on the backs of my skis until I felt stable enough to stand back up. After figuring out that I could do that, I’d lie down with my back on my skis, knees bent in my boots, whenever we stopped at points on the slopes to wait for the rest of the group to catch up.
“That’s not normal,” my dad would tease. I thought it was just that I was younger but, yeah, no, definitely not normal.
For every benefit of hyper-mobility I noticed, there was a drawback, and they weren’t equal. I could do things in gymnastics and dance easier than some of my friends, but I also got injured easily. The range of motion part of those silly presidential fitness tests9 were easy, but I started getting headaches early and my mom would take me to the chiropractor three times a week after school. My fingers are great for playing piano (even though I can barely reach an octave because my hands are too small) but they aren’t great for chords on the guitar.
It wasn’t until I went to see a physical therapist for my shoulder that I had a word for it.
“Your range of motion is above average,” he mused. He was confused: I was complaining of pain, but I didn’t have any trouble moving the joint. A few tests later and he was explaining hyper-mobility to me.
Then my occupational therapist said the same thing. Then my new chiropractor. Then the people at the assisted stretch place10 I started going to I want to do a whole post on assisted stretch but it’s essentially when a professional, often someone who studied sports medicine, guides you through stretches to help you release tension. By helping you do the motions and hold positions, they get you to achieve deeper stretches. It’s something between a massage and physical therapy and it’s most commonly used by athletes. It’s been a game changer for me in preventing flare ups of my fibromyalgia. And on and on until I ended up getting evaluated for EDS11. EDS, or Ehler’s Danlos Syndrome, is a connective-tissue disorder with 13 subtypes. I’m suspected to have hEDS, the hyper-mobile type, but my screening left something to be desired (another story for another day).
Like so many other things, it was a bunch of little conversations and moments that led to me questioning if something was different about my experience. Friends who were surprised I could hold hands behind my back when I put one over my shoulder and one around my side. The trainer at the assisted stretch place pulling my leg across my body and being shocked how far it could go. Rolling my ankle, having the side of my foot touch the ground, and just being a bit sore. And it was only because people online talked about having EDS that I knew what it was when that chiropractor brought it up.
There is something incredibly validating about hearing that someone else has the same symptoms as you do. Knowing that someone else sees and experiences the world the same way I do makes me feel less alone. And it’s a lot easier to navigate my illnesses and mitigate issues when I can rely on the knowledge already learned by others. It’s why I love this community. What’s almost magic is that this post might be that moment for someone else. I’d love for you to share in the comments an experience you’ve had like this (if you had), related to disability/chronic illness or not.
May your spoons be plentiful, friend :)
A doctor who specializes in conditions effecting the brain and the eyes together.
I bet you’re looking at the nearest white wall right now.
It was while looking up visual snow to check some terminology for this piece that I learned that having “entopic phenomena,” or, seeing lights when your eyes are closed, isn’t normal. I literally had another one of these experiences while I was writing this post.
Let it be said that there are far more good things about TikTok: coverage of Palestine, community projects like the Ratatouille musical, debates that allow everyone to connect for a moment, life hacks and PSAs, small businesses finding their consumers, and, of course, cat videos.
Alas, patriarchy strikes again.
Take that, parents! It’s not that I’m not trying to keep my room clean or remember to make doctor’s appointments (which, shit, I was supposed to call the dentist today)! It’s that I’m trying so hard and failing!
POTs, or Postural Orthostatic Tachycardia Syndrome, is a condition that falls under the category of dysautonomia. In the simplest of terms, my body sucks at circulating my blood, it pools where it shouldn’t and thus isn’t in my brain, and my heart has to work extra hard to get it back where it’s supposed to be. Which results in a high heartrate, pre-syncope and dizziness and, for some, it can make them pass out.
The easiest of ski runs (aside from the bunny hill, which is where learners practice).
The fitness gram pacer test is… No but seriously, these sucked.
I want to do a whole post on this but essentially I’ve been going to a place that does assisted stretch where they guide you through stretches to help you release tension. It’s something between a massage and physical therapy and it’s most commonly used by athletes. It’s been a game changer for me regarding my fibromyalgia pain.
EDS is Ehler’s Danlos Syndrome, is a connective-tissue disorder with 13 subtypes. I’m suspected to have hEDS, the hyper-mobile type, but my screening left something to be desired (another story for another day).