After years of strange symptoms, mounting chronic pain and fatigue that have especially worsened over the past months, lots of doctors, even more tests and treatments, and lots of exhaustion, I was finally diagnosed with Hypermobility Ehlers-Danlos Syndrome (EDS) earlier this month. And let me tell you…it was an adventure getting to that point. I am SO tired of wrong diagnoses, so, in a way, this is a relief to know what is “wrong with me.”
“I never heard of that…”
First time I heard of Ehlers-Danlos was when my rheumatologist said she thought that’s what I had…she made me do many more tests and ran a full diagnostic to confirm that I had hEDS (hypermobility type).
Apparently, most people, even most medical professionals, also haven’t heard of EDS. The Ehlers-Danlos Syndromes are genetic degenerative connective tissue disorders where our bodies either produce collagen incorrectly, or never produced enough collagen in the first place. There are 13 types of EDS, and symptoms among them can can all vary, but many include: severe chronic pain (due to the body working extra hard to keep all our bones and extremities together without the help of collagen), frequent dislocations and/or subluxations, tendency to bruise or injure very easily,”stretchy” or velvety skin in some of the EDS types, hypermobility in a few of the types (including the type I have—hEDS), scoliosis, flat feet, long arms, legs, and/or torso, postural orthostatic tachycardia syndrome (POTS), extreme fatigue, irritable bowel syndrome (IBS), migraines, tension headaches, premenstrual issues, and many other complications.
(Funny side story: when the rheumatologist was explaining all the possible symptoms and complications of EDS (and why she thought I had it), I fainted on her…probably due to the POTS that is caused by EDS. So that of course led to even more annoying tests! C’mon body…work with me here!)
Anyway…I have all the symptoms listed above (except for the stretchy/velvety skin), and have had many of these since I can remember: migraines, tension headaches, and “growing pains” since I was in elementary school, fainting spells (not knowing I had POTS) whenever I stood up too quickly or moved too suddenly since I was about 3, ear infections left and right when I was little, super clumsy (my nickname was Klutzkowitz)…and a “cool” feature to gross out your friends when you’re younger: I’m double-jointed and can make my elbows connect behind my back haha…but I never knew that was actually a “symptom” of a larger condition.
For three decades (eek, when did I turn 30??), doctors had been diagnosing me with various different ailments and issues, often with wrong diagnoses—making me always think I was such a gangly, awkward, and sickly kid (and leading to some people, such as my father, thinking I’m a hypochondriac…but he’s an a**hole—so really I should’ve never let his opinion count), rather than realizing I had one condition that was the cause of all of these issues.
I also find out that this condition is chronic, has no cure, and that symptoms will likely increase or get worse with age. I am trying different treatments for the pain, meditation for my stress, and daily weight-training to help my muscles keep my body strong, and help it to take off the stress of the muscles keeping it together.
So, I’m having mixed feelings. On the one hand, I now finally know what is going on with me, and can find online support, resources, and I can find the right exercises to finally help and not hurt myself physically. On the other hand, it is chronic and genetic, so it’s not going away, and it’s rare—I don’t know anyone else in person with this disorder, and most people I speak with never heard of it.
There is hope…
I found quite a few support groups and resources online. Apparently people with EDS has a super active online community—a type of family…which is awesome for me, because I love anything “tech.” I discovered we’re often are called “zebras.” Personally, I like it, not just because zebras are awesome animals, but also for the explanation behind the name.
Why zebras? I liked this response the best from ehlers-danlos.com:
People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.
So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD.
A group of zebras is called a dazzle.
We are a community of individual zebras, we are stronger together, and we dazzle.”
Life may continue to be hard, and EDS is going to give me a rough road…but this little zebra isn’t going to give up—I’m going to dazzle! 😉 *Jazz hands*