Ironic Chillness

[Description of images: woman performing the Beighton test (i.e. bending some joints so that they’re hyperextended) in a field - see more detail below]

I've been asked a number of times now by medical professionals and other people to demonstrate my hypermobility in various ways. Regular people ask me if I can put my feet behind my head. Medical professionals ask me to take the Beighton test. It's basically a test where you're asked to do some contortions, and if you can do 4 or more of them, then it's a sign of hypermobility/joint laxity/double-jointedness. By itself, it's actually no big deal. Hypermobility can give you a competitive advantage in activities like ballet or gymnastics or even swimming. But if you have hypermobility plus some other symptoms (particularly joint pain), it could indicate Joint Hypermobility Syndrome (JHS) or some sub-types of Ehlers-Danlos Syndrome (EDS).  This post is to raise awareness of hypermobility, JHS, and EDS.

(after years of being in the mental health system and now finally getting treatment for physical illness)

People who get frustrated with you for not getting better as quickly as they want.

People who just keep giving/suggesting to you different diagnoses rather than engage with your actual issues (especially if your diagnosis is already well-established and other things have been reasonably ruled out).

People who decide on your behalf that you shouldn’t go on a really useful medication in order to protect a hypothetical, unborn child that you’re not even sure you want to have.

Likewise, people who tell you what reproductive choices you should or shouldn’t make without asking you what you want. 

For a physical condition: “We’ve done every test, so it’s probably psychological” (because all physical conditions have an associated blood test?)

People who blame you for the issues you have.

People who understand the etiology of your issues as some kind of childhood trauma you don’t remember and almost certainly didn’t happen.

People who tell you that your critiques or questions about their treatment are a sign that you’re resistant and you’re ducking important issues. Always a red flag when people start making accusations about your character rather than, you know, addressing your concerns.

People who spend a lot of time praising your (in my case, male) partner for doing ordinary household chores and putting up with you.

People who require your story to be corroborated by someone who isn't disabled before they believe you.

People who don't know basic facts about conditions and treatments within their area of specialty.

People who can't or won't show their working or explain things to you.

People who start looking at their watch or forcing you out of their office after an inordinately short period of time.

People who assume that you’re lazy.

People who tell you how ‘severe’ they think your case is (especially if they don’t know you well, and especially especially if their views of severity are stereotypical/bullshit, e.g. “you must be a mild case because you’re still going to work”, or “you can’t have ADHD because you have a degree”).

People who seem to live by the blanket rule “pain isn’t a problem”.

People who gaslight you.

“But there’s nothing we can do about it if you have that, so it’s not worth getting a diagnosis.”

“It’d probably be fine if you lost some weight.”

People giving you a neverending list of lifestyle changes to make before they’re willing to make any investigations (”don’t eat dairy for a month and then see how that goes”, which then goes to “take this vitamin for three months” or “don’t eat gluten” or “try mindfulness”, “do a 6-week course of CBT” etc., etc. until everyone is dead).

People who say they “don’t believe in [insert illness]”.

It's not that I'm anti-mindfulness at all. It's just that it's not treatment and it's so often used as a way to tell people to shut up. Or it suggests that your biggest issue isn't the pain itself but that your threshold for coping with it isn't high enough. But I'd put that back on the concern troller: The problem isn't me slapping you in the face, the problem is how you deal with that. It is beside the point that I could've just not slapped you in the face.

But seriously, I'm so afraid that I'm going to spend my life trying to extrend my coping threshold further and further and keep getting denied or waitlisted for treatment that would materially benefit me. To a large extent, expanding my ability to cope is a red herring. And because nobody can cultivate an infinite ability to cope, nobody gets to judge whether or not I'm robust enough.