One of my “special interests” and favorite things I studied in college was medieval art. I love all the wacky marginalia illustrations—so in addition to watercolor, I’ve been re-imagining/illustrating some of my favorite marginalia creatures and medieval art.
My son! turned thirteen! yesterday!
The meaning is arbitrary, really, but all the same, it has significance.
Throughout my life, even long before my son, I’ve been infamous for my non-traditional ways. I’ve questioned (and continue to question) everything, and I’ve never been able to do things that simply don’t make sense or that don’t work for me. “Because this is how it’s always been done” is never an acceptable response.
When my son was very young, I really struggled. Not because parenting was hard or my son was difficult, but because I found myself in the deep end of an identity crisis. And really, it wasn’t that bad when he was a baby, because I had a great time with him when he and I were doing our own thing. My husband worked long hours, so I took The Kid to the zoo, having entire conversations with my tiny little human in his stroller, telling him I couldn’t wait for him to be older to tell me what was on his mind. We wandered the aisles of the grocery store, where I talked to him about foods he’d try some day. Or, because I loved to spend time cooking, I’d prop him up on his little bouncy seat on the kitchen island to talk him through all my dinner prep—and he’d always watch me, wide-eyed and serious, occasionally babbling shrieking with delight as he waved his hands in the air. I’m not the type of person that does baby talk, so we just had long, serious “conversations” all day every day.
I eventually acknowledged that it would probably be good for me to have some time to myself occasionally (even though I don’t think I needed it that badly then), and I wanted him to make some friends his own age. So we enrolled him in Montessori preschool, where he stayed through kindergarten. He loved that first school, because it was familiar and routine and he saw all the same kids every day for three years. I loved that first school because his teacher really “got” him; she saw him as I did—an exceptionally bright and curious, quirky, sensitive kid with a ton of creativity.
Those days were good for him, but that’s when it got really hard for me.
Going to preschool meant I had to socialize, too. Since he “traveled” through preschool to kindergarten in the same room with the same kids for those three years, the parents also socialized—play dates, holiday events, school events. I wasn’t interested in the other parents or the group dynamics, but having struggled and been ostracized as the “weird kid” throughout my own school experience, I wanted my son to have a better experience. I forced myself to participate and go to their houses and play along for his sake. I didn’t like or dislike the other parents. Most of them were fine—I just felt so uncomfortable around them, never feeling like I fit in. I didn’t have the same priorities, I didn’t care about the same things, I didn’t want to do things the same way. And throughout those years, I perfected my fake smile, exhausted myself feigning enthusiasm, spent my free time doing things that weren’t my choice. I “hmm-d” and nodded my way through kindergarten and public school conversations. I allowed my husband, son, and I to be swept up into a little group of parents and kids who had frequent picnics and get-togethers, watching all the dramas unfold between them, cataloguing the personalities so I’d know how to “be” for each of them.
Things blew up eventually, as they always do when you’re trying to force things. But it wasn’t until my son started struggling in public school that I cast off my concerns of fitting in. I stopped worrying about being “that parent” and started researching and advocating for him. I pushed back, hard, on everything that didn’t make sense until I finally yanked him out of everything to start homeschooling. (And without going into too much detail, for the sake of his privacy, it turns out I was right about everything. Gifted, ADHD, and autistic just like me. So much so that the director of the last school we tried emailed me to tell me she admired how I fought for him, and that it spurred her to bring in specialists to see why so many of the “bright” kids there were struggling—and they discovered other kids with dyslexia and other learning differences.)
We began homeschooling about 5 years ago, and he has thrived in ways I couldn’t even imagine. He plays with all the kids in the neighborhood who are younger, and their parents often stop us to tell us how incredible he is with their kids. How patient and kind he is. How polite he is. He takes “unaccompanied minor” flights to visit his grandmom frequently, and every single time my mom picks him up at the airport, the flight attendants and some other passengers tell her how wonderful he is. When you homeschool your kid, people inevitably whine at you “what about socializing?”—well, this kid is a serious extrovert, and he knows it. He’s friends with the baristas at our local Starbucks. He’s friends with one of the cashier’s at the nearby Bartell’s—they always have conversations about video games and movies and sci-fi space concepts.
I could write a novel about all the ways people think he’s amazing. And personally, I love his independence. I love his thoughtfulness. And I love how confident he is in challenging the status quo and pushing back. I value that he doesn’t just fall in line, even if it means giving ME a hard time. (I used to worry that he was too much of a rule follower when he was little. He grew out of it, and I love when he argues with me or refuses to do something and explains why.) I never wanted a “mini-me” (I find that term so offensive)—I wanted an independent thinker. When we told people we were homeschooling, the most common response was “I could never spend that much time with my kid.” Honestly, that’s one of the things I love about homeschooling—I’ve always enjoyed time with him. I still do, and I treasure it even more since he’s getting older and we spend less time together. I think my son is freakin’ fantastic.
I could tell you what a genius he is. I could tell you how Husband takes him to PAX, where he plays all the demo games and has the developers looking at him in amazement. They tell Husband that he plays the games and figures them out better than 80% of anyone else. He’d never been able to do math worksheets and exercises in school, but he whips out complicated math in his head and does Youtube videos explaining the new physics engines in such and such game. He has this entire community of people he plays with regularly, and blows through campaigns in record time—but then he’ll sit down and patiently walk his grandmother through “Call of Duty” so they can play together when she visits. (True story! And kudos to her—but she’s as amazed by him as I am.)
I could tell you about his wicked sense of humor which is sharper than even mine. And that he, like me, is a hardcore information seeker; information is our love language.
One of the ways I’m non-traditional is that I view him as an equal, not a “child” or a “mini-me” or as “my” anything that sounds like he’s my possession. We give him a TON of freedom—so much so that I think it would terrify other parents, but that the freedom he’s been given has taught him to figure out who he is and to be self-aware enough to make smart decisions. (He goes to bed when he’s tired, and I’m shocked at what a reasonable hour that is. He exercises and gets outside regularly, of his own volition. He eats healthily. He tries new things. And on and on.) He has confidence because we’ve shown him that we trust him.
But the thing I really want to share and the purpose of this post is to say that he has truly been the greatest teacher in my life. I have always been ostracized or viewed as “weird” for doing everything so differently. And I tried so hard to force myself into a little normal box when he was young. I thought I was doing it for his sake. I thought it would be better for all of us if I tried harder to be a “normal” or “traditional” parent. But he showed me that I have always been right to follow my instincts, to challenge the status quo, and that no one knows my family better than I do. He showed me that it’s not just ok but GOOD to be different. He taught me to never doubt myself—or him—again.
We don’t actually head over to the South Lake Union area often, but it’s one of my favorite areas of Seattle. We drove over last night, to enjoy a lovely Summer evening after last week’s heatwave broke, and it left me thinking, “Why don’t we spend more time over here?”
I use a very light hand in filters and editing on photos, generally—but Seattle was so ready for her closeup last night that all of these photos are 150% au naturel. (Zoom in to check out the people slacklining from the bridge and the kids that hung out on the railing for a really long time, until they worked up the nerve to take the leap.)
You can view more of my SLU photos here.
I’ve begun the process of a proper Ehlers Danlos diagnosis with a specialist here in the Seattle/East Side area, and as part of that process, they also ask questions/diagnose for issues commonly paired with Eds, Pots and Mast Cell Activation Syndrome.
Once I’d begun reading up on POTS (postural orthostatic tachycardia syndrome), I absolutely knew that I have it. I got dizzy all the time a a kid, and was repeatedly told I should make it a habit to stand up slowly (because I always got dizzy and woozy every time I stood up).
I’ve always had low blood pressure and, though I am physically active, I am not the type of athlete that should have a resting heart rate under 45bpm. Conversely, my heart rate can spike pretty quickly. I’m always tired, often foggy-headed, and never feel rested even if I seemingly get a full night of sleep. (As an autistic person with ADHD, sleep will always be an issue—but I never feel much different if I get 7 hours of sleep or 3.) I’m prone to feeling like I’m going to faint, on a bad day, but several times a day, upon standing or walking, my vision gets blurry and dark around the edges for a few moments.
I frequently get “brain fog” (and always have), I sometimes have heart palpitations, I’ve had occasional night sweats since I was a kid, frequent low-grade headaches. I’m usually running hot, but will occasionally be too cold (and then ping pong back and forth between the two). I have what I refer to as “attacks” of the digestive sort a couple times a year (intense cramping and pain, turning white as if all the blood drained from me, sweating, nausea, etc. that all passes after a couple hours). Discoloration of my extremities, shaking (sometimes after intense exercise or just walking a few miles, sometimes after adrenaline surges), and on and on. These are all symptoms of POTS.
My symptoms, the effects of POTS, have actually been far better in the last several years than when I was younger. That’s because I had naturally come to the conclusion that to not be in pain, not have horrible brain fog, and to move past a “5” on the “how do you feel on a scale of one to ten, one being terrible and ten being great” scale, I must move every day (walks, run bike, strength training) I must drink a lot of water, I must snack/eat small meals throughout the day. I’d also mostly stopped drinking alcohol years ago (save for a couple glasses here and there in the Summer or when we go out for dinner), I’ve eaten a primarily plant-based diet since I was twelve, I don’t drink anything other than water and my one morning cup of coffee, and I’m a probiotics-taking champion.
But for the most part, I still always feel low level crappy. Once upon a time, during my yoga days, I tried elimination diets, I tried cutting out dairy and gluten, I tried giving up my one cup of coffee, and on and on. I just got used to feeling “meh” and tuned most of it out. There’s a part of me that doesn’t want to get my hopes up… yet I’m excited to be finally figuring all this stuff out.
My “treatment plan” thus far involves drinking electrolytes every day. High-powered electrolytes that come in medical-looking packets, marked “only use with medical supervision,” that are dumped into 32oz of water. Every day. (I was warned they would taste salty, but so far it just tastes like really crisp, clear water.)
I’ve been doing more reading about this, and there are numerous forums and articles (by doctors and from people who also have POTS) about the importance of sodium for people with POTS. I was told that just drinking plain water isn’t enough, as our bodies won’t retain it. The addition of electrolytes (specifically for sodium), helps to retain the water and hydrate your body (if you remember chemistry class, you might recall the connection between sodium and water)—having always had low blood pressure, I’ve always ignored advice about limited salt intake, and all the forums and articles I’ve found echoed “there’s no upper limit on salt intake for people with POTS.” It means that, even though I try to drink a lot of water, it’s still not enough and isn’t retained in my body well enough.
There’s a few other “action items” for me, in regard to managing POTS and Ehlers-Danlos, but I feel like this simple habit of starting my day with 32-oz of electrolytes could be a small game changer. A shift in a new direction, anyway. The specialist said she’s seen people notice a big difference within a few days, so here’s hoping.
I’m certain my son also has hypermobile Eds and POTS—after all, he’s the reason I realized I have it. Upon the advice of the specialist, I’m having him drink a big glass of electrolytes each day, also, but he’s taking Nuun flavored tablets. Just to prove a point: I got a glass ready for him and called him out to the kitchen. As he walked in, I noticed the face he was making and asked what was wrong—he said, “nothing, I just got dizzy when I stood up.” So I laughed, said, “that’s what this is for,” and shoved the glass at him.
If you spend any time within autistic circles, or looking at autistic’s Instagram accounts, you’ll know that “you don’t look autistic,” is one of those vehemently despised sentences that people say to autistics frequently. It’s a beast of a thing to hear.
There are two reasons this is a crappy thing to say:
One, it plays into the assumption that the “neurotypical world” dictates what is and is not autistic, and that autism is still largely defined by what annoys/bothers/confuses neurotypicals rather than the lived experiences and inner world of autistics. (And because we mask so much, to our own detriment, sure, you won’t always “see” what you think makes someone autistic.)
Two, it plays into the idea that because we don’t “look” autistic, we must not be “that” autistic or need much support/struggle that much.
All of the above are as false as can be.
All the ways I’ve learned to mask and present myself on the outside are very, very different from what’s going on in my head and body. You cannot tell someone is autistic by looking at them. Allistics (non-autistic people) are really and truly stuck on the idea of eye contact; one of of the reasons “you can’t be autistic” that we hear most is “because you make eye contact.” And as unimportant and unreliable as the eye contact “test” is, it’s a notion that just won’t die, so let’s have at it for a moment. Eye contact is not a diagnostic criterion. The full set of criteria include “deficits in social communication and interaction,” which can include eye contact, but eye contact is not mentioned anywhere. (The DSM language sucks, by the way—we don’t have a single deficit, thankyouverymuch. What we have are differences. And I hate the word “diagnostic,” because being autistic means I am a different neurotype, not a person with a disorder.)
To the outside world—to you, to the cashier at the grocery store, to my professors, to coworkers, to friends—I appear to make eye contact. So does my husband (who is also autistic). But what you don’t see is that I hate eye contact. It has always made me uncomfortable, largely because it’s something I don’t do naturally and so I’m afraid I look weird or squirrely when I’m forcing it. Watch closely, and you’ll see a sort of choreographed routine where I briefly make eye contact and then find all these little ways to give myself a break while trying to appear that I’m not purposefully breaking eye contact. I’ll take any chance I can get to look away, as though I’m thinking about what you’re saying. Or I’ll take frequent sips of my coffee. Or I’ll stir the coffee. Or I’ll look at the door at people coming in, if we’re out at a coffeeshop, for example. Or I’ll just do my favorite trick, whenever possible: keep my sunglasses on. My sunglasses are such a “thing,” that people used to bug me to take them off, as far back as my teen years. (I’m also infamous for having unusually large sunglasses.)
You might ask, “Well, if you can make yourself make eye contact, why is it a problem?” Well, if you can’t do full splits, what happens if you force yourself to do it? Hurts, right? But can I call you flexible because you can force it?
When I am diligently “making” the eye contact I know that I’m supposed to make, it means I’m not paying attention to what the person in front of me is saying; I’m so focused on making the eye contact, monitoring how long I’m making eye contact, wondering if it looks natural enough or if I look like I’m staring at you, if I’ve made eye contact for too long, if it’s been long enough that I can take a break, and feeling so, so very uncomfortable the entire time. (And if you watch my husband closely, you’ll see that he always takes his glasses off when he’s face to face with people; he does this because then faces and eyes are blurry and he’s no longer making direct eye contact.)
This “faking eye contact” is called masking. (And yes, it’s faking eye contact. I’m not engaged. I’m not connected to you. I’m not listening. I’m just going through motions of what is expected of me.)
Y’all don’t know what it autistics look like, because you think the autistics you’ve seen in movies are what all autistics are like. There’s that saying, when you’ve met one autistic, you’ve met one autistic. So many of us have learned to mask—essentially performing and spending all our energy on passing as neurotypical so that we aren’t mocked, infantilized, or ostracized. As a kid, and as a teen, I was picked on A LOT. I didn’t fare very well as a young adult, either, and I’m pretty certain that most of my masking skills were learned in my early twenties. (As a teen, for example, I simply learned never to raise my hand and never to ask questions in class. My questions were about small details no one else needed, or gave the impression I wasn’t paying attention because I don’t process verbal instructions very well, or because I understand things differently… whatever it was, asking questions essentially resulted in my being laughed at or yelled at.)
Not all autistics can or do mask, but some of us have learned to mask and to mask really well, which means we’ve learned to hide the traits that “make us look autistic.” That doesn’t mean we “aren’t autistic anymore” or that we don’t have any issues if we’ve learned to “play normal.” It means that we’ve learned to do hide ourselves to avoid the negative consequences of simply being ourselves. It is exhausting, damaging, and can lead to all sorts of physical and psychological problems.
Autism isn’t about what you see. Autism is about what we experience. (Also: autism isn’t caused by vaccines, a poor diet, or any other external nonsense. But it is hereditary, so…) I, like many, have spent so long masking that it’s been a long, long process to find what’s “mask” and what’s “me.”
If I told you what goes on in my head and how I feel during social situations, you might declare that I “just” have social anxiety. But I only feel awkward and uncomfortable and self-conscious around neurotypical people. It’s always been a struggle to manage small talk or casual interactions where conversations are about mundane-to-me things. It’s a real struggle to pay attention. But I also have to work hard to monitor myself every second, to gauge when I should speak, how I should respond, and not saying anything “weird.” In a group, I’ll laugh when everyone else laughs simply because everyone is laughing, so I know I *should* laugh even though I don’t know why anything was worth laughing about. If I let my guard down, I’ll have “inappropriate” (to neurotypicals) reactions or make faces that don’t make sense. When I was much younger, I was frequently called “weird” or “intense.” People would tell me that it was obvious I didn’t like someone, though I had no idea why they’d say that as I had no particular feelings about the person in question. I was just a weird kid and a weird teen, but once I entered the “working world,” and my behavior and reactions were being noticed and called out more frequently, I learned to monitor myself closely. I had always been extremely blunt and direct, but I learned to speak in the neurotypical, roundabout way or just keep my thoughts to myself.
Anyway, I don’t have social anxiety; I can manage just fine in social situations when there’s real conversation about interesting (to me) things. I am a share-r and absorb-er of information. I’m also pretty good one-on-one (versus in groups), and people are often my special interest. I love meeting new people, I love digging in to what makes them tick, and I absolutely love connecting with someone. That means that I’ll happily press for details and ask all sorts of questions about a person’s life—sometimes I can tell I’m being “weird” again, and I’ll stop. But sometimes, they’re happy or flattered. I’m actually quite an extrovert and tend to make at least one friend or other connections in every class, job, or social gathering I’ve ever been in.
I connect with people, individuals, fairly easily. I have a long history of instant-friendship with people I now recognize as also being neurodivergent (whether actual ADHD, autistic, or some other thing that neurotypicals have classified as a “disorder”). However, I’ve never maintained friendships very well—I stay friends with other neurodivergents who understand and are cool with not speaking or seeing each other for months, even years, on end. I don’t know how to manage, nor do I really care about, the minutiae of daily life. I don’t want to get together to “catch up,” i.e., to sit and drink coffee while talking about feelings or just going over all the stuff that’s happened in our lives over the last however long. It’s not because I don’t care about the person in question; it’s because I don’t see the point.
BUT! I will remember really obscure details from conversations ten, twenty, even more years ago. I remember things that most people think are throwaway, and I have, on more than one occasion, freaked people out by mentioning these things I remember. (There’s something about me that inspires people to let this information fly, even if as an afterthought, but I catalogue it because it’s interesting. More than once a person has nervously asked me “how did you know that?” and then they looked confused when I say, “you told me.” But I don’t just say “you told me,” I’ll describe where we were, what they were wearing, any other people that were around, and what led up to them telling me—hell, I might even describe the weather. Oddly enough, that only seems to make them more nervous not less. LOL, as they say.) So I have also learned to lie and to pretend not to know or remember things.
I could write a novel on all my “social difficulties” or “social deficits,” as the DSM calls them. I also have sensory issues, particularly with sound. I’m alexithymic, struggle with interoception, and can get obsessive about interests or even people. I tend to be over-expressive. I have absolutely no interest in the routines and rituals that most of society cares about, even for myself (baby showers, weddings, funerals, etc.). I am not lacking empathy—I am, as most autistics know we are—hyperempathic, and struggle to manage other people’s emotions or get swept up in them. I don’t have much patience for sentimentality, though. I do rehearse social interactions or things I plan on saying. As a kid, I “collected” and “staged” toys instead of playing with them like neurotypical kids do. I still collect things and love to organize them. I don’t read a lot of fiction, though I did as a teen in order to understand my peers better; I am a voracious reader, though, and always have been—as a kid, I had a set of Disney encyclopedias that I loved to read over and over and over again. (Did I mention how much I love information? And learning?)
I used to be a tech trainer and an EFL/ESL teacher (English as a second/foreign language). I didn’t have any anxiety about standing up in front of a room to teach groups of people—because training is 95% performance and personality. I didn’t have to struggle with things to say or how to respond; my job was to teach the same curriculum over and over and over again. Technical training was super easy. Not only did I have a set list of topics to cover, but I got to use all the same jokes and tech speak for every class. I was always working off a script. But after full days of training, particularly when I traveled to train on-site, after each day of teaching, I’d always have to run to my hotel room and hide in the dark with the tv and room service. I always squirmed my way out of invites for dinner or drinks after classes. It was exhausting, and I needed to recover.
The sensory issues and synesthesia make things incredibly difficult at times. My synesthesia mostly involves color, sound, and movement, and I tend to have strong, emotional reactions to a lot of things in my environment. I hide my reactions and stifle any outward expression of emotion; quite simply, people think it’s weird to start crying because a color evokes such strong feelings or because I’m so taken with the extraordinary colors of a sunset. I fidget A LOT, which I also try to curb around other people, but then it’s harder to focus. Sometimes I fidget because I’m too hot (I don’t regulate body temperature well) and the tactile sensations of being hot and sweaty are too much. Or because the seams of my shirt aren’t even. But I learned to hide the fidgeting the day two girls in my class, in 7th grade, picked on me when they saw me fussing with my bangs (because I was hot and they were sticking to my forehead and making me uncomfortable).
I was diagnosed with misophonia a while back, which involved getting a hearing test. My hearing test showed that I have superhuman hearing for high pitches. That means many of the sounds that don’t bother most people “pack a bigger punch” (as my audiologist said) for me. Thanks to the pandemic and general population explosion of Seattle, my neighborhood has gotten MUCH, MUCH noisier and I feel like I’m being suffocated and assaulted most days. The leaf blowers, ambient traffic, motorcycles tearing down the road, the neighbors kids… all these things are stressful and, at times, physically painful. I’ve often had to turn the volume on meetings down or step away completely because someone’s voice (or the way they smack their lips when they talk, or other similar sounds) send me straight into fight or flight mode. I used to struggle with panic and rage when I felt trapped (and couldn’t get away from these sounds)—but working at home and learning to request accommodations has helped immensely. (And accommodations in my case really just mean nothing more than “can leave meetings or keep the camera off, as needed”). Sometimes I have to leave the room when my husband or son is eating. I’ve been known to send my husband all-caps, rage-filled texts for half an hour when I’d be trapped on a bus or in a room with someone who was eating a bag of chips, for example.
And no, I cannot just tune things out.
This is all truly just the tip of the iceberg, as they say. I assure you, yes, I am very much autistic, defined not by how well you think I do engaging with you, but by how exhausting it is pretending not to be.
Notes:
Dysautonomia is a disorder of the central nervous system. That means issues with regulating heart rate, temperature, blood pressure, etc.
POTS = Postural orthostatic tachycardia syndrome and is a form of dysautonomia. The most simplified explanation is that it’s triggered when you stand up after sitting or laying down. (For example, I often have to remember to stand up slowly after sitting, otherwise I’ll get lightheaded and dizzy.)
POTS is a form of dysautonomia, both of which are frequently seen with Ehlers-Danlos syndrome.
I’ve had so many weird little physical issues throughout my life—it’s hard to keep track of them. But I was discussing Ehlers Danlos and some of my weird issues online, and I had mentioned that I have a pulse oximeter, blood pressure cuffs, and a small EKG reader at home, because I’ve regularly had these phases, or episodes, where my heart rate goes crazy at the slightest thing, my fingertips and hands often feel numb and tingly, I get lightheaded and just feel “off,” dizziness, or full on BPPV (benign paroxysmal positional vertigo). Every time I speak to a health professional and mention my trouble with sleep (specifically, lately I’ve had the worst sleep inertia and physically can’t move my body out of bed for at least an hour after waking), they ask if I’ve ever been assessed for sleep apnea. I have not, and even though my husband has said I don’t snore or gasp or do anything that sounds like apnea, I purchased a pulse oximeter to monitor my blood oxygen at night and during the day. My blood oxygen is always fine. I also mentioned that I drank water mixed with electrolytes once, and my heart rate went berserk. So after reading all this, someone DMd me, “That’s POTS.”
It wasn’t a surprise to read, because at that point I’d already been heading in that direction. But the confirmation was validating.
My body has never regulated temperature well. My hatred of heat is notorious, and there are people who think of me any time they hear the word “roasting,” in any context—because I’m always waving my hands around my face and announcing that I’m roasting. It’s a thing. As a kid, I frequently had bouts of heat exhaustion. My mom has talked about seeing me red-faced and very hot to the touch, but my skin was bone dry. I was even sent to an ice water bath once, in an attempt to cool me down quickly.
As I got older, I’ve collected stories about “that time I went hiking” or walking somewhere in the Winter on a day that was 20-degrees or colder, and within 5 minutes of moving I was tearing off my jacket, my sweatshirt, etc. to spend the next couple hours walking around in a tank top. (There are pictures of me at the zoo in Slovakia in a tank top surrounded by people with Winter jackets. Just sayin’.)
I am ALWAYS too hot. When I sleep, I have to wear lightweight shorts and a tank top at most (or usually, nothing at all). If I wear more than that, I will lie awake feeling as if my internal temperature has been cranked up to 200. When I buy sheets and blankets and pillowcases, I always look for things that are breathable or specifically mention being a fabric designed for “cooling.” Sometimes I’ll wake up drenched in sweat, and people like to tell me it “must be perimenopause” or some such—but you’ve clearly missed the part where I said this has been going on since I was a kid.
Dizziness has also been a pretty common feature in my life. I got dizzy a lot when I was younger, and I was told that I should be careful to stand up slowly. So I did that for awhile. I’ve had two medical procedures that were minor, but I almost went into shock afterwards because my system was so out of whack and blood pressure had plummeted.
I’ve been chasing down explanations for all these seemingly random health things for years. Every time I would google them—numbness in fingers, dizziness, regular but infrequent heart things, the way my toes would turn white when I was cold… and The Internet would always show me results for diabetes. Then I purchased glucose monitors, but my blood sugar was always normal. Everything I’d ever go to the doctor for would turn up “normal.” Everything would always resolve itself but then happen again months or weeks or even a year later, in a perpetual cycle. Like how I went through a period of feeling wonky after running—one doctor said that what I was describing sounded like ketosis, but everyone knows how much I love my carbs (specifically, pasta!). So I got some ketone test strips and, as usual, everything showed up as normal. I went through a phase of feeling really wonky after trying to do the “right” thing and force myself to eat healthy breakfasts each morning (I don’t usually like to eat in the morning); I thought I was experiencing reactive hypoglycemia, but that all went away, also.
I could write a novel about the many, many “symptoms” I experience off and on with regularity. Since using apps on my phone and watch to remind me to drink water and track my intake, the weird things happen less frequently. One might say that it must mean all my issues are related to dehydration: it’s possible, but I don’t drink so little water that I’d qualify as dehydrated. However, my system is super sensitive to “not enough water.” If I go one day or just a few without refilling my 16oz glass every hour and a half or so, the effects pile on immediately (dizzy, anxious, headache, etc.). Hypovolemic POTS is related to low/lower than normal blood volume, so this tracks with everything I’ve just described: if I have lower than normal blood volume, drinking “not a lot” of water would have this effect on how I feel.
It would also track with my low blood pressure but very low resting heart rate that spike quickly when I’m anxious, nervous, or just stand up after sitting for a bit. After two minor medical procedures that involved anesthesia (one being a breast reduction surgery), I almost went into shock after waking up and sitting up. This also tracks with POTS.
And the only real treatment/solution for POTS is… to drink a lot of water throughout the day. Which I had already realized has a huge impact on me, hence the “remember to drink water” apps.
Ok, so. Ehlers Danlos!
As I mentioned in a previous post, this particular disorder was on my radar thanks to the many autistics that I follow on social media—many autistics have Eds. I am IMMENSELY grateful that the people I follow have talked about it so much, so that I was able to recognize it in my son (and then myself) and begin creating plans to manage it. And that’s why I’m talking about it now. I hope I can help others figure this out the way so many have helped me.
First, I’m going to talk about Ehlers Danlos, and then I’ll get into the other two pieces of the puzzle that frequently go hand-in-hand with Eds: POTS (Postural orthostatic tachycardia syndrome) and Dysautonomia.
In simplest terms, Ehlers Danlos is a disorder of connective tissue. Our bodies are FULL of connective tissue; connective tissue is our skin, our mouths, our organs, etc. There are 13 types of Ehlers Danlos, classified by what part of the body they impact most. (Vascular Eds, for example, is an especially dangerous type that affects your heart, arteries, etc.). The type that my son and I have is hEds (hypermobile Ehlers Danlos). Hypermobility means that your joints extend beyond the “normal” range (not to be confused with flexibility, which is about the muscles). I consider myself very fortunate, because from what I’ve read about each type, hypermobile Eds is the only type that doesn’t create a shorter life expectancy. (You can read about the different types here.)
I will be writing specifically about hEds (hypermobile).
The first step towards considering hEds is looking at your joint mobility. Surprisingly, up until a few weeks ago, I had no idea that I was hypermobile. I’m not nearly as hypermobile as some people are, but I’m hypermobile enough to be pulling some parlor tricks with my hands. Back when I did yoga, my teachers would warn me to use my muscles more, as I was hyperextending my knees or elbows, but I didn’t realize the extent of it. The first thing I did was assess evaluate my hypermobility using the Beighton Scoring System (which you can find by clicking here). I score 6 out of 9: one point each for each of my knees (2 points total) plus one point each for each of my elbows (2 more points) + one point for being able to bend over and put my palms flat on the ground without bending my knees and + one point for each of my pinkies (2 points total for pinkies) that I can bend back to 90 degrees or greater with my palm flat on a table. 2 (knees)+2 (elbows)+1 (hands to ground)+2 (pinkies) = 7 points. The only thing I can’t do is bend my thumbs back to touch my wrist.
Not part of the diagnostic checklist, but I have super hypermobile shoulders, can do “bird sign” with my hands, as well as bend all my fingers back at a 90 degree angle to my hand, my toes and feet are quite bendy (I used to torture people with “fire toes” pose when I taught yoga… I didn’t realize it was torture for other people!), and apparently not everyone can stretch and splay out their toes the way I can. (My hypermobility is pretty mild, especially compared to my son’s.)
Another criterion on the checklist: “soft, velvety skin” that bruises easily. My husband has been kind of obsessed with how “soft” my skin is since the day he met me. I always thought he was just being cute. Or weird. But he is not the first person I’ve dated who’s commented on this. Now that I know what I’m feeling for, I can notice it in myself. Would you like to stroke my arm? It really is soft and velvety. LOL Anyway, you can find the full checklist here, rather than me reiterating all of it again. But what I’d like to talk about now are the things that AREN’T on the checklist and how it can impact you.
Back when I was around 19, I used to go ice skating with my then-boyfriend (a hockey player). One night, I tripped over my own foot while doing crossovers. I fell and broke my wrist. About two years later, at a Christmas party for the company I was working for part time while going to school in Philly, I fell and broke my ankle. My mom expressed concern that it seemed like I broke bones easily, but I dismissed it as having just fallen “just right.” A lifetime later, my son broke his leg (specifically, his tibia) at school. All he was doing was jumping around in the grass. Everyone was surprised he broke it so easily, but again, we all just figured it was a fluke. He fell “just right.” But now that I know what I know… it’s very clear that we broke bones due to hEds. Here is just one of many papers looking at “higher fracture prevalence and bone size” in Eds.
And then there’s the dental issues. I have severe periodontal disease. I’m currently in the process of having multiple rounds of scaling and root planing (multiple rounds because I can only handle sitting in the chair and going through this process in one-hour chunks). If you look up “periodontal disease,” you’ll often see the causes listed as “genetic” or “poor dental hygiene.” I was baffled about how my gums had gotten so bad, since my oral hygiene is NOT what you’d call bad. But once I realized I have hEds and brought it up to my dentist, she agreed that hEds very likely caused this, as the periodontal tissue around my teeth is degraded and breaking down and it may not regenerate after the scaling and root planing. Now that we know about the hEds, I will probably be going for irrigation and cleanings once every three months for the rest of my life. And I will possibly lose more teeth (I had one pulled already, a couple months ago). I also have a pretty strict oral hygiene routine to follow at home now. The good news is I may be able to prevent my son from going through all of this—now that we know about the hEds, my dentist is going to do an evaluation and start monitoring for this. Although that also means he’ll need to follow a very strict oral hygiene routine for the rest of his life. It’s possible his teeth will be fine—but his hypermobility and the “softness” of his skin is far more than mine, so it’s also very possible he could start losing teeth to periodontal disease as soon as his late-teens or early-twenties if we don’t get on top of it now.
Sleep issues are prevalent among people with Eds—though sleep is also a struggle for autistics (*check*) and people with ADHD (*waves*). So, ya know… I just never sleep. Ok, that’s a bit dramatic, but I can’t say I’ve ever woken up or gotten up in the morning feel good or like I got “good sleep.”
People with hEds often have chronic pain of some form. Several people have told me that “growing pains” in kids is a classic sign. I cannot recall if I experienced this, but I can tell you for certain that my son has. For as long as I can remember, he’s complained of his legs hurting, of aches in his body, random headaches, etc.
I’ve seen some articles stating that there seems to be a link between frequent infections, including ear infections, and Eds. I had VERY frequent ear infections as a kid, though my son has not.
Many people with hEds have dislocated their joints—in my case, I used to dislocate my shoulder A LOT just by sleeping. My shoulders are extremely mobile, as I mentioned already, and they can make some pretty loud, horrific sounds.
I used to wake up in pain all the time, usually from my hips but also my neck. My hips are quite “loose,” as they say. I also get strange bruises on my feet all the time.
I have often suspected I may have Raynaud’s syndrome, which studies suggest have a higher prevalence with hEds – you can look up Raynaud’s for more detail, but a quick summation of my experience: I can be standing in a hot shower and look down to see my toes have a blue tinge and are icy cold.
I cannot grow my nails out, no matter how hard I try. They bend and break, often even bending in the wrong direction if I catch my hand on something.
Constant fatigue.
“Owl neck” (I was seeing a chiropractor a long time ago, trying to get at the source of chronic back pain. She was clearly getting frustrated with me, as there were no structural issues and yet… I always hurt. She had commented once, after assessing my range of motion, that I had an “extremely good” range of motion in my neck.)
Much of my aches and pains have been held at bay simply because I’ve been so much more active in the past several years, and I use an app to remind me to drink enough water. It is highly likely that my poor interoception and impaired proprioception have made it so that I’m not in severe chronic pain 24/7. However, if I do not move every single day or don’t drink enough water, I’m full of aches and pains. (Right now, for example—I was out in PA visiting my mom for a couple of weeks, and it always takes me a couple weeks after returning to Seattle to get back into my routines. Jet lag weirdly always hits me a week later, too. So right now, my body is in agony from being slightly dehydrated and from missing so many days of my 4-mile walks. I’ll feel better once I’m back in my routine, but it takes time to get there.) I often have a “coming down with the flu” feeling when I’m off my routines or not moving enough. “Feeling like you’re coming down with the flu” is something I’ve seen mentioned numerous times in accounts by people with hEds.
But the even bigger symptoms are wrapped up into POTS and dysautonomia. I’ll talk about those next.
So I have this new parlor trick! It’s come up a couple of times in the last week where I’ve mentioned having hypermobile Ehlers Danlos (hEds); when I say this, I hold my hands together as if in prayer, and then pop my elbows up and out so that only my fingers are still pressed together in prayer while bent at a 90-degree angle to my palms. Like this:
I never realized that this was a thing, that it was unusual to be able to bend my hand like this.
I can also do this (bend my pinkies past 90 degrees):
And both of my elbows hyperextend (especially my extra-freaky left one):
I can do what I just found out is called “bird sign”:
And I can easily bend over and put both palms flat on the floor without bending my knees, each knee hyperextends, and apparently not everyone can splay their toes out as wildly as I can. (You really don’t need a picture of my feet, do you? Or maybe you do—I painted my toenails a few days ago, a shade of green that I love but very much calls to mind “ectocooler.” IYKYK.)
Before I explain what this all means, I will also mention that from the day he met me and all the 15 years after, my husband regularly goes on about “how soft” my skin is. I always thought he was just being weird. I mean, what does skin normally feel like?? Though he’s not the first person to say this to me, either.
Well, it turns out these are all symptoms of Ehlers Danlos type III – hypermobile. Abbreviated hEds.
Ehlers Danlos is quite common among autistics. I know of it thanks to all the autistics I follow on social media who’ve talked about it. When we visited my mom in Pennsylvania a couple weeks ago, I was sitting on the couch when my son walked into the living room, bending his fingers against his face to crack them as he does five thousand times a day. He’s done this for years and years, but only this time did I look up and see what an extreme angle his fingers were bending. I asked him to bend his fingers back again for me, and when he did, I exclaimed, “Oh my god, you have Elhers-Danlos!” Of course I started reading more about it, which led me to the Beighton Scoring system for joint hypermobility & assessing Ehlers Danlos.
I score 7 out of 9. The only thing I can’t do is bend my thumbs back to my wrist.
Additionally, I found that periodontal disease and dental issues are extremely common, as Ehlers-Danlos III is a disorder of the connective tissue. Tooth pain got me back to the dentist a couple months ago, and since then I’ve been back to have a tooth removed, multiple deep cleanings, and future appointments to remove old, childhood fillings. As a kid, I had new cavities every single time I went to the dentist. My dentist told me, and my parents, that it wasn’t my fault and there was absolutely nothing I could do—the grooves in my premolars and molars were deeper than average, so no amount of brushing could get at anything accumulating there. (Had I been born a few years later, he said, I could have gotten them sealed. I see this being pushed on kids today, but it was brand new when I was around 12 or so.)
I’ve spent hours and hours researching and reading up on Ehlers Danlos; a full day alone was spent on “dental anomalies in hEds,” during which time I discovered that those extra deep grooves are often seen with hEds. And when I mentioned to my dentist that I was now certain I have this, she first said she was sorry to hear that (as it’s highly likely I’ll need to have more teeth removed as I get older), and then confirmed that it made sense given the level of periodontal disease I was now dealing with. My oral hygiene is not bad, not by a long shot. However, the degradation of connective tissue supporting my teeth leaves spaces under my gum for plaque and what-have-you to collect. I will be battling this forever, and I need to be supremely diligent about things like flossing, using anti-bacterial toothpaste & mouthwash, etc. It’s likely I should get cleanings more frequently than average, also.
Unfortunately, my son also has hEds, and he is far, far bendier (I’ve said his hands are like rubber) than I am. So upon the advice of my dentist, they’ll be assessing the measurement of his gums and connective tissue (it’s possible he’s already having degradation), and upping his oral hygiene game. Water piks, ahoy!
This also led me down the path to two other conditions that are frequently seen with hEds: POTS (postural orthostatic tachycardia syndrome) and Dysautonomia. These two conditions + hEds neatly tie up and explain every seemingly random & weird health/physical thing I’ve experienced over the years that had me racing to read tons and tons of symptom checklists and articles on various conditions. My inability to regulate my body temperature (always running hot), the frequent lightheadedness and dizziness, waking up with numb fingers, the two broken bones that had my mom worrying that I had brittle bones. My son also broke his leg when he was 6, from just jumping around in the grass at school. How easily he broke his tibia is explained by hEds.
And oh! People think I’m being dramatic, but I assure you I’m not: when I was younger (like all throughout my twenties or so), I would wake up in the morning with my shoulder dislocated. (Yes, I know how that sounds and YES, it was DISLOCATED.) It was among the worst pain I’ve ever felt. I remember just laying there, terrified of moving because the slightest bit of movement would cause fresh waves of agony. But then I’d suddenly hear a loud POP which brought immediate relief. In the last few days, I’ve read multiple accounts of people with hEds dislocating shoulders by doing things as simple as putting their coat on.
I had originally thought I couldn’t have hEds because I’m “not that flexible.” But one, I actually AM that flexible when I do yoga consistently (I could put my legs behind my head, do full hanumanasana splits, and all sorts of pretzel-like things). And two, I realized it’s about joint mobility, not flexibility. Hypermobility means my joints allow for greater range of motion (think of a door on hinges: tight hinges might only allow you to open the door halfway. Loose hinges would allow you to swing the door wide open.). Flexibility is about muscles—you can work on your muscles to lengthen them. I can go back to doing regular yoga to lengthen my muscles again. And at the ripe old age of 46, would be able to put my legs behind my head again. !!!
I plan on writing a lot more about this—a LOT more. The POTS and dysautonomia connections are huge. But I have a tendency to write nothing and then a novel, so I’ll stop here with this introduction. If you suspect you have hEds or are interested in learning more, stay tuned.
Logo decided! My initials (nh). Font: Audiowide
Took a creative play break to work on a logo for myself. If you can’t tell, I like color—and color is very much representative of my life and who I am. I was also looking for fonts that were playful and had a strong variation between upper and lowercase letters. Lastly, I love retro/vintage/80s vibes.
It’s true, I do have a pathological need for fairness.
But in all seriousness, I laughed when I saw this. You’d think these would be, inarguably, positive traits, no? Yet I could give you multiple examples of getting into hot water (or outright trouble, as a kid) for each and every one of these items.
Perhaps that’s because this list goes hand-in-hand with our inability to recognize social hierarchy and authority? 🤔
My husband turned fifty this past week, so I created this silver fox portrait. Since diving in to learn more about Illustrator, I’ve come to love it and prefer using it much more so than Photoshop. I thought for sure I’d be a landscape person, but I also found that I really enjoy doing portraits. And I love experimenting with ways to create a sense of texture.
