Trying to Relate to Disability (and different ways to fail)

In which our bendy friend indulges in some educationing:

I have Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome (JHS or EDS; it's basically interchangeable). It is a genetic disease, often degenerative, which causes joint instability. My joints don't like to stay in their sockets, basically. EDS is associated with chronic joint and limb pain, but not just when joints actively sublux or dislocate: many EDS patients experience their chronic pain from microinjuries, too small to see on an MRI but more than enough to hurt, as a result of damage caused by repeated injuries from joint instability. So joint instability causes pain, which causes fatigue, which causes crankiness (which causes blogging). Pretty simple, right?

Fibromyalgia is another chronic pain condition, whose etiology is not quite as well-known as that of EDS. Symptoms of pain and fatigue are pretty much all they have in common: one is genetic, one isn't; one has pain caused by repeated joint trauma, one doesn't; one allows me to do double-jointed tricks that cause even my flexible dancer-friend to avert her eyes with disgust, one fails to bestow that incomparable blessing.

So why, whenever I tell people that I have EDS and explain that it results in chronic pain, do people always respond with something about their friend who has fibromyalgia? It's like if I told someone "I have cancer" and they respond with "Yeah, my friend has AIDS" and expecting me to relate to that. Cancer≠AIDS, right? But hey, they're both bad diseases that people have walks for, so totally an appropriate response!

(And why is it always fibromyalgia, guys? Can't someone have a friend with Handigodou Syndrome or something?)

In all seriousness: I appreciate that my friends and acquaintances are trying to sympathize with my experience. There's a very sweet narrative implicit in it ("My friend has chronic pain, and s/he's still my friend; I'll be there to help you through this, too). I even understand that most able-bodied people don't have much experience with disability and thus feel awkward and without a traditional social script, so they just try the best they can. But let's just consider this one of those social faux pas that, committed once, you avoid in the future. Y'know, belching at a formal White House dinner. Or wearing Uggs in public.

Some bizarre ways of reacting and relating to my EDS:

I must have that too! Sometimes, to illustrate how hypermobility works, I'll demonstrate some of my "tricks;" show people my hypermobile joints or stretches that shouldn't be effortless on someone who hasn't purposely stretched in six years. Most, if not all, are also present in people who have benign hypermobility, or plain ol' "double-jointedness" (totally not a scientific term, folks). The idea is that I have that, but on crack: if my muscles aren't strong enough to keep a given joint stable, it will sublux because my ligaments are so loose that they're not going to keep it in place. It's also a genetic thing; a person without a propensity for joint laxity cannot, simply by stretching, get themselves into the same state I am in, for instance. Double-jointed people and others who rely on their flexibility can do some degree of damage through a similar mechanism, but this is my natural state. The fact that you, like I, can touch your thumb to your forearm does not mean that you are walking around with Joint Hypermobility Syndrome. It just means you're naturally flexible. If you had this, by definition, you'd know, since one of the major criteria of Joint Hypermobility Syndrome is pain. No hurty? No problem.

You're really flexible? I used to be too! I did gymnastics in elementary school. Wonderful. I did too. So nice that we share something in common that has nothing to do with my disability. Again, people try to relate to my painful joint disease by talking about completely harmless activities that they did. Flexibility itself is not why I'm in pain; subluxations and dislocations and the damage therefrom are.

Can you do this? *Does some stretch*
Actually, no. As much as I would love to be Cursed with Awesome and have a disability superpower like Daredevil, it's really more like being Blessed with Suck. EDS does not automatically enable you to become a contortionist and join Cirque du Soleil. Like I said, I haven't been on a stretching regimen in years because I'm not doing dance anymore or high school PE, so while my ligaments are congenitally loose, my muscles aren't trained to stretch, so any stretch that involves significant muscle flexibility is likely more difficult than just doing weird tricks with my fingers, where flexibility is more about ligaments than muscles. I'm a 20 year-old woman, so I am still respectably flexible like most women my age, but not to the freakish degree you'd expect from a hypermobility disorder. Again, flexibility is not the problem. It's not exactly a side-effect, but there's more to Joint Hypermobility Syndrome than that.

As an interesting note, I'm actually not supposed to do a lot of stretching. It could potentially weaken my ligaments even more. So no yoga for me.

...Can stem cells help?
Not unless they can replace all of the defective collagen in my entire body AND alter my genome so I never produce another defective cell. That's like using stem cells to make your brown hair blonde. Moving on.

I totally feel you! Sometimes when I've been running 5k in bad shoes, my knees hurt!
You might want to get some better shoes, first off, but this is not like that. Your joint pain is not like my joint pain. Your tiredness at the end of a long day is not like the tiredness of someone with chronic fatigue syndrome/myalgic encephalitis. Normal people get these things, and we use the same words to describe them (there was a wonderful post here about this issue), but they're just on a different scale. Comparing ordinary or small-scale problems to disabling ones and should be treated accordingly. You should not necessarily expect that someone with a disability can push through pain or fatigue the way you can as an able-bodied person. They might pay for it later, or simply not be able to do it at all.

__________________________

I understand that you, as an able-bodied person, might not be able to relate to exactly what I'm going through, as natural as that desire is among people. I honestly don't expect you to; after all, you're able-bodied and I'm not. So the solution is simple: don't try to relate if you can't. It will save us all some awkwardness.