When I met with the geneticist in March who gave me my hEDS diagnosis, I brought in a 14-page (legal size paper) document summarizing my current health issues. I got a little embarrassed when I was preparing the document—one person surely can’t have so many issues?

hEDS is a genetic disorder of connective tissue. We have connective tissue in every part of our body, including skin, veins & arteries, tendons, cartilage, eyes, and organs, so this disorder affects every part of the body. Often the most obvious sign is hypermobile joints, but there are systemic effects as well.

I started with a list of joints that are problematic for me—either they sublux (partially dislocate), hyperextend, or are painful. By the time I was done I realized I’d basically just listed every joint in my body 😩 🤣 If I was forced to choose, I’d say my knees, ankles, fingers/thumbs, and neck are the worst. Oh, and maybe tailbone, SI joint, and hips and TMJ. And my toes and shoulder blades. Oh my ribs, too. Ha ha—and then I’m back to just listing them all. My left kneecap is objectively the worst; I’ve subluxed it thousands of times. Before my third surgery on it last year, I could sublux it just rolling over in bed. I’ve also sprained my ankles more times than I can count.

A funny “side effect” of disordered connective tissue is poor proprioception. Our ligaments and tendons are part of the body’s feedback system so that we know where our limbs are and how hard we are using our muscles (light touch or grip of death!)—this is called proprioception; my connective tissue doesn’t transmit as much of that information, so I’m quite clumsy! I also bruise easily because of hEDS so that’s a fun combo.

Because of the loose ligaments and tendons, sitting upright and standing are my “kryptonite”. If you’ve ever been in a meeting with me, you’l have seen me “pretzeling” my arms and legs, trying to keep myself upright and support the weight of my head on my neck. Standing still is even worse—all the effort of staying upright plus autonomic issues make me incredibly tired. They both cause my joints to slip out of place and my muscles to spasm.

I have a lot of autonomic issues: I have episodes of tachycardia and difficulty breathing, chest pain, postural tachycardia, Reynaud’s syndrome, difficulty regulating my body temperature, IBS/digestive issues, and difficulty regulating electrolytes (too much water makes me pee too much and dehydrates me 🙄).

I get regular headaches and migraines. I have painful muscle tension/knots in my upper back, neck, and jaw muscles, and the muscles of the pelvic floor.

I have GERD (PPIs help, but I still sometimes aspirate stomach acid in my sleep—let me assure you this is extremely unpleasant and I do not recommend it!), and “mystery abdominal pain” episodes so intense I can’t speak or even stay standing.

One time I even made my own pain scale—you know that annoying thing medical professionals do, asking you to rate your pain on a scale from 0 to 10. I never know how to answer that—do you mean literally this instant, or 5 minutes ago in the waiting room on a chair that aggravated my tailbone, upper back, and neck? Or the walk over here, when my right hip went wonky, my hip flexor was killing me, my ankle was grinding and stabbing, and my big toe hurts SO BADLY! So I made my own scale, explaining what I meant by the categories (ignorable or not, still able to talk/work/sleep or not, etc), examples of pain in each category, and rough frequencies. And then I had a big laugh—just the fact that I need to (or am able to) make my own pain scale basically tells you everything you need to know about my pain.

I have partial prolapse of my pelvic organs, irritable bladder, and incredibly sensitive skin. I have really bad (and very painful) varicose veins, and nerve pain in several parts of my body.

Local anesthetic often fails for me at the dentist, so many of my procedures have been done with no or only partial numbing—another item for the “do not recommend” list!

I have fatigue *all the time*—in fact people with hEDS are often misdiagnosed as having chronic fatigue syndrome. I also have insomnia and non-restorative sleep and pain that interferes with my sleep (painsomnia!).

But, I’ve also never really known anything different. This is just what life is like to me, and I didn’t realize other people weren’t also having all these things. I just thought we all had a list of stuff this long and we all go around hiding it and pretending we’re fine and learning to mildly dissociate from the body as a coping mechanism to get through the day. Joining some chronic illness support groups has been a great help in feeling validated/connected with other people who have similar struggles … plus they post the best memes!!

@ehlers.danlos

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