People have the strangest reactions to learning about Ehlers-Danlos Syndrome. So, telling them about it when you are already socially awkward quickly becomes a study in ridiculousness. For instance, I got to have that discussion recently with my hair stylist. It ended with me jumping up onto things alongside the majority of the salon staff. I promise there was no alcohol involved. I just would rather do practically anything – including impromptu social experiments – than make “small talk.”
My stylist knows that I have dysautonomia. I hadn’t exactly planned to tell her, as how does one broach that conversation during “small talk” at a salon, but fainting in her doorway last year kind of forced the choice between sharing the diagnosis or paying whatever the deductible would have been for an ambulance ride when the owner was afraid otherwise I’d die on him – or worse sue him. My old office, before my bully-of-a-boss fired everyone in it and made its lone survivor a fully remote worker, used to have a faulty heater. I had to wear a sweater, an undershirt, and a camisole just to keep from turning blue in that office most of the year. In winter, I’d then add a big heavy waterproof coat, scarf, gloves and hat on top of it to walk the about ten minutes from my office to where I get my hair cut. I learned last winter that just because it is 50 degrees inside your office and about 20 degrees outside, some salons will inexplicably choose to keep their facilities at about 80 degrees. If you walk into one of those salons wearing all those layers, you’ll pass out in the doorway from the dramatic temperature change. At that point, the cat’s out of the bag.
Now I have a cane. And, I use it to go to the salon. It is, once again, twenty degrees outside and still inexplicably about 80 degrees inside. Having my cane for balance seems especially prudent since, in addition to my faulty autonomic nervous system’s desire to pitch me floor-ward, the abrupt thermal change also fogs my glasses and leaves me effectively blind while maneuvering the six stairs to get down from street level to the salon during my period of thermo-non-regulation. I don’t think the owner would call an ambulance a second time, but it’s still good to have a balancing aid for extra reassurance. The official mascot for EDS is the zebra, but I don’t think there is one yet for dysautonomia. I’d like to propose the turtle. We are as unable to regulate our body temperature as a cold-blooded animal, we move slowly, we armor ourselves in protective outer shells – er, compression bodywear – and we spend most of our time horizontal.
Not having a cane and then later having a cane elicits questions. I’ve almost perfected my answer to, “Couldn’t you just take collagen supplements?” That is the usual first question I get upon attempting to explain EDS to someone new. My stylist, however, skipped the usual questions. She didn’t ask about collagen samples or yoga – or make any snickers about how my Partner probably “enjoys” my flexibility – because she’d already asked at least a few of those questions of someone else first. I am, it turns out, one of two (!!) clients of hers that have Ehlers-Danlos Syndrome. The other one had already fielded most of the first-level questions for her, including explaining why collagen supplements don’t work. Thus, I was able to skip immediately to clarifying the one still-open question that remained after zebra client #1 had thoughtfully fielded the first set.
I gather this mysterious zebra now has a fantastic doctor that she sang the praises of to our stylist, but she only obtained her diagnosis after years of first being dismissed and/or misdiagnosed by the rest of her doctors. She seems to have shared her entire diagnosis story. The “years of being dismissed or misdiagnosed” is the part that stuck with me from her story. But, for my stylist, one other detail tiny detail captured her imagination.
Zebra client #1 said that she knew that she’d finally found a doctor that could help her when that doctor watched her hop up onto the exam table and immediately asked, “Have you ever heard of Ehlers-Danlos Syndrome? You jump like someone who has it.” My stylist asked if I jump like a zebra, too. I can honestly say, though, that prior to that secondhand story I hadn’t known that “jumping onto things” was a potential diagnostic feature of EDS at all. I also couldn’t quite mentally imagine what “jumping like someone with EDS” might look like. How many ways are there to jump anyway?
After I failed to resolve my stylist’s lingering curiosity, we moved on to the generic small talk that is the norm during things like haircuts and manicures. Did I ever mention that I hate small talk? So, when my stylist later noted that I didn’t use the step stool to climb into her styling chair – I kind of bounced into it? – I suppose I could (and maybe even should) have politely steered her back to small talk. Running commentary on how I move is a bit outside of the norm for the kinds of conversations one usually has during routine service appointments. But, I’m socially awkward and I have ADHD. Generic small talk is intensely stressful for me. I think I use more spoons trying to keep to ‘polite conversation’ then I do just bouncing up and down on things to satisfy random curiosity.
My stylist theorized that perhaps the tendency to “bounce” instead of “step” up onto things is what that doctor had noted is more common in EDS. This, of course, led to the stylist in the next chair, who had overheard the conversation because the salon isn’t very big, pointing out that far more of her clients bounce into the chair than the statistics I’d given suggested could possibly have Ehlers-Danlos. Thus, maybe it wasn’t just the “bounciness” itself, but the fact that a doctor’s exam table is high enough up that most people can’t bounce onto it at all that matters?
And this is when we realized that I was the last client in the salon and the check-in counter was about the same height as a doctor’s exam table. Thus began our social experiment. I can, in fact, bounce up onto a counter of exam-table height without any need for a step stool. However, so can about 25% of the salon staff. What none of that spry 25 % can do, though, is also lift a leg up high up to place it on the counter and then spring up off of the other leg. EDS: I can lift my leg up as high as my own head to spring onto something, but I can also dislocate an ankle walking down a flat, paved sidewalk. I’m a study in extremes that way.
The contrast between my simultaneous “bounciness” and need to use a cane to not fall over in the hot salon while standing near the counter while the others attempted to complete their own jumps seemed to accomplish what my prior more technical descriptions of EDS have so far failed to do: make non-zebras go, “Wow, that sucks.” I’m not sure if that’s because bouncing on counters is an effective explanation or just a memorable one. It was, at least, a change from the usual blank looks I get when explaining EDS technically. And, I can’t overstate that it also got me out of small talk.
Being a data geek, I was sorely tempted to note that our whole experiment in whether striped girls can jump had been confounded from the start by the fact that I not only have EDS, but I also have ADHD. There is no way to confidently establish from my data as the “EDS” subject whether my “zebra” bounciness was truly the result of EDS fidgetiness, ADHD fidgetiness, or some combination of both. I stayed silent about that glaring experimental design flaw, though, because a) I’ve already shared more of my diagnoses with the employees of that salon than I have with some friends and b) I don’t know if that original zebra would be as willing to provide “control zebra” data at her next appointment. If she has ADHD, too, then her data would be just as contaminated as mine. If she doesn’t have ADHD, she might be as intensely uncomfortable jumping on tables as I am making small talk! I don’t have any clean data to truly support my hypothesis, but I do suspect it’s the ADHD part of me that hates small talk, not the zebra part…
I am somewhat invested in obtaining viable empirical data now, though. How do striped girls jump? Is EDS fidgetiness distinguishable from ADHD fidgetiness? Were we able to figure out what that other zebra was referring to when she said her “jumping” was a signifier of her diagnosis? I went down an embarrassingly long rabbit hole of chronic illness message boards and facebook groups searching for any discussions of “bouncing” or “jumping” onto exam tables being a hint of zebra-ness, but I found nothing. Has any other zebra ever heard of this?
And, while we’re at it, has anyone ever figured out how to make small talk? Because, if I’m honest, that bit about being flexible enough to get a foot in the mouth and a head up the ass at the same time probably applies as much to me making “small talk” as it does to clueless neurotypicals asking about my diagnoses…