It might seem cool that I'm weirdly flexible, but I'm in pain all the time.
When I was a little kid, I was renowned for my “circus freak” flexibility. I would gross out the other kids by bending my fingers all the way back, or impress them by doing perfect splits. I secretly thought that these abilities were the manifestation of some mental ability, that I just “knew how” to do these things, and that it was somehow related to my unusually strong five senses and my smarts. Adults told me not to ever get “out of stretch” like they had. I thought I was pretty fancy.
When I was a teen, I started getting really, really tired and achy. My body felt weird, like it was a malfunctioning robot that I couldn't drive very well. I fantasized all the time about removing my spine and wringing it out to crack it and other such manipulations.
I'm not a big sharer of feelings, so I just developed an eating disorder instead. It's hard to explain the connection in a logical way, but basically I thought there was probably a mini-me inside fat-me that matched my neurological map and functioned better. My sole memory of bringing The Body Stuff up with anyone is the time I was asked why I was sitting down in a museum with my family on vacation: my back hurt. My dad laughed and said I was high-maintenance. I never mentioned it again.
In college, I did a shitload of drugs to power through the fatigue and bad feelings. I didn't realize that I was having joint pain; I'm autistic, and have a hard time locating sources and types of body feelings. I defiantly embraced a reputation as a shameless recreational drug user. When I got clean a few years later for financial reasons, I felt even lousier. I figured this was because I had abused my body with drugs and an eating disorder. But even after I had been sober and a healthy weight for a long time, I wasn't feeling that much better. I had actually been more functional on drugs.
Flash-forward to me getting involved with my current boyfriend who, at that time, was my housemate who shared the master bedroom with his abusive boyfriend. We started G-chatting across the house on the regular, and one day he told me he fainted a lot. I saw it in real life, too — his boyfriend just let him fall over. His mom categorically denied that he was passing out all the time and conking his head on things. Apparently, no one had ever once acted like this was a big deal even though this had been going on nearly ten years, and he had started losing his ability to walk. He was made to feel like a huge faker — that it was just his mental illness acting up.
My codependent ass decided I was going to do some Googling and get to the bottom of his issues all superhero-like. One minor obstacle: I had zero knowledge of human anatomy or biology. I did vaguely recall from my eating disorder treatment days that some girls' fainting stuff was called “POTS,” so I tracked down a blog about that. POTS is Postural Orthostatic Tachycardia Syndrome, meaning when you stand up, your heart rate goes up a lot, very suddenly, and you get woozy. The owner of the blog said she also had a condition called Ehlers-Danlos Syndrome, a connective tissue disorder.
She described the constellation of weird symptoms that she had not initially realized were EDS: gastric bloating, muscle spasms, all-over joint pain, fatigue, hyperflexibility, skin fragility, poor proprioception — this was starting to sound really familiar. I looked at some forums, and it sounded exactly like my shitty feels! I read the diagnostic criteria, and they were mostly stuff I had thought was normal.
I nonchalantly mentioned to future-boyfriend that I thought I had EDS, and wisely suggested that he get checked for POTS.
It turned out we both have Ehlers-Danlos Syndrome. He was diagnosed with the Classic type, and I was diagnosed with the Hypermobility type. The manifestations and progression of EDS are very different from individual to individual, so our symptoms aren't that much alike. Pretty strange coincidence, though, huh?
Even though I've now met many people in real life who have EDS, most general practitioners more or less don't seem to know that it exists; to get diagnosed, you have to find a specialist (usually a geneticist) who is known to have heard of it (EDS forums keep lists of receptive doctors — that's how sparse of a practitioner map we're talking about here), convince your GP to write you a referral, and wait for months or years until that specialist can see you. In the meantime, you have probably reached the stage where your collagen is worn down to bone-on-bone joints, you are likely in constant pain, and your limbs, digits, vertebrae, collarbone, jaw, etc. may or may not partially or fully dislocate on a regular basis. You'd think it would be pretty easy to recognize that something is really wrong with a patient when they can dislocate their shoulder right in front of you without wincing because they're used to the pain. Instead, a common response is to accuse the patient of wanting attention or narcotics, apparently.
There is not a single step in our medical care that my partner and I didn't research, identify, and fight for by ourselves from square one. From the time we first realized that we probably have the syndrome, it took about three years for our issues to be believed and documented, and we consider ourselves extremely fortunate. EDS is rarer than faeries, I've heard. EDS would have been diagnosed in childhood, doubters have said. You're too young to be in pain; you seem fine. If you had EDS, you'd be screaming in the ER right now. Did you read this on the internet? Have you talked to a therapist about your hypochondria? When was the last time you got some fresh air? Your Google search does not equal my medical degree. Go home and get more exercise. Drink more water. Cheer up, buttercup.
When authority figures blow you off, you find out stuff you didn't want to know about your relationships with your friends and family. It turns out surprisingly few people will believe someone's experiential claims without an expert's validation behind them. Even if the sufferer requests no assistance, some friends or family may be weirdly put off, seemingly offended that you have the audacity to be disabled, especially if you didn't seem disabled before.
Families especially seem to have a hard time accepting EDS. My partner's family tried to shame him out of using the power wheelchair prescribed by his doctor and paid for by insurance (no small feat in the US), and I bet I know a few otherwise brilliant people who think I should just get out of the house more and stop taking those nasty pain pills for my collapsing spine. They can be really addictive, you know. You could wind up with health issues.
I asked a Facebook support group what they would want people to know about EDS. They told me: how intensely the government is restricting opioid pain management; that doctors gaslight EDS patients; what is lost along the way (jobs, families, hobbies, sanity); that even doctors who claim to know about connective tissue disorders usually don't; that Chiari malformation, IBS, autoimmune conditions, autism, and OCD are correlates; and that EDS is a collagen-production disorder which affects many systems, not just joints. My type of EDS is only one type. Classic has more noticeable skin manifestations (my partner is super-duper soft). Vascular comes with a high risk of spontaneous organ rupture and death and is a whole different ballgame. There are several other less-populated subtypes as well.
I was also called upon to relay that EDSers across the internet call themselves zebras, in reference to the old medical aphorism “If you hear hoofbeats, think horses, not zebras.”
Dazzle, zebras, dazzle!