Now, we get down to the bare-bones of EDS-HM; The dislocations. This is the bit that causes the most comment, the most horror, and is probably the most unusual and characteristic symptom of the condition. It’s also the thing that’s usually what gets an individual zebra to go from “Eh, I’m just a bit odd” and to first run screaming to their doctor, suddenly needing a diagnosis.
The dislocations tend to first happen at the point of big hormonal changes; Right at the start of puberty (somewhere between 9-14), after the end of puberty and the start of proper adulthood (18-25), during menopause or when the testosterone levels start falling (40-50), or during hormone therapies (whether contraceptives, HRT, gendered hormones etc) – The most common being either at the start or end of first puberty.
They happen at the slightest provocation, and in fact they probably happen our whole lives, but when they get suddenly worse – More painful, harder to pop back into place, more frequent – they turn hypermobility from “That party trick where you put your foot on your shoulder” into “That thing that keeps you in bed all day, or sometimes makes you fall down the stairs.” The official term for the types of luxations that we get (Subluxations and dislocations collectively) is “With or without trauma” – Meaning that sometimes they happen because we’ve been hit, and sometimes they happen because it’s Tuesday. For the record – A subluxation is basically an incomplete dislocation, one which either jams on the edge of the “socket” or returns to its usual place without much intervention. Unfortunately, the word “subluxation” has also been stolen by unscrupulous chiropractors to mean (and I am not making this up) “Tiny misalignments of your spine that cause all sorts of diseases”. So, saying the word in front of many physios and even many doctors will result in disbelief and the horrible assumption that you’re talking about something counterfactual and thus that everything you say is suspect. And correcting them, and explaining what a medical sublux is, makes a lot of conversations harder, since once a medical professional is on the back foot, and thinks you know something they don’t, they have the tendency to go into angry, defensive mode and refuse to engage any further. Almost exactly like a small child that wanted chocolate AND strawberry ice cream, so when offered chocolate, they spit it out and pout. And this is a problem.
Because dislocations hurt. Every time. It’s not really something that gets better over time, although you do get used to it, so it’s less frightening after the first few years of them becoming regular. A particularly bad one still feels like the world is ending (A particularly memorable hip dislocation, whilst snowed in at a friend’s house, sticks in the mind years after it happened, and brings a visceral stab of pain with the thought) but the everyday run-of-the-mill luxation, which just hurts, and makes the limb unusable or at least agony for five or ten or eighty minutes, is… Well, it’s not fine, but it’s normal. You know those injuries that make rugby players cry and curl up and be stretchered off the pitch, and possibly end their career? Imagine a few dozen of those, a day. Painful.
The worst thing about this is that they often slip back into place on their own, or are only visible from a very specific angle on x-ray (which has no perspective, and of course has no “before” photograph), so if you turn up in A+E, still screaming in pain from one, there will often be nothing to show for it on the observations, and it takes a good orthopaedic to say “No, I can see what the problem is, or was, and this needs to be managed”, rather than just a bland “computer says no”, because they took the x-ray from the wrong angle.
The other problem with dislocations is that they make you really rethink what’s a “joint” and what isn’t. Asked to name joints, many people would say something like “shoulder” or “knee”, but there’s at least four ways that the shoulder can go wrong (Glenohumeral, scapulothoracic, acromiclavicular and sternoclavicular joints, before we even get into the ribs shifting and detaching at either the spine or the sternum ends) and a lot of things that you wouldn’t normally think of as having joints can nonetheless decide to luxate. How often do you think about your carpus or tarsus? The tiny mesh of vaguely cube-shaped bones in the hand and the foot. There’s eight bones in each carpus, making up eighteen joints, including where they join the metacarpus and the radius and ulna. And they can all, subtly, go to pieces. Likewise the tiny bones of the inner ear. Or the hyoid, slipping around between its tendons, a long way from any other bone. Or the unfused vertebrae of the sacrum and the seams of the pelvis. In some cases, even the sutures of the skull.
The final problem with a dislocation is that when it happens in public, if someone else sees it, everything stops. Even if you could have just shoved it back with a bit of a moment alone and a slip of whatever painkillers you’re using, if someone else sees it, you have to do the hospital dance – Even if not literally going to hospital, at least spending ten minutes justifying why you’re not going to hospital, and then probably another twenty talking about what’s wrong with you.
Horrible things. And there’s not much to do for them but to manually relocate as best you can, and then lie still, possibly with painkillers and muscle relaxants, until they get better. Or, more realistically, to shove them back into socket with your other hand, and then get on with whatever you were doing, because time stops for no man.
(Notable runners-up to be “D is for…”; Drugs, Henri Danlos, Disbelief, Depression, Damnatio ad absurdum)