Over 10 years of “rest”…
Over 10 years of “take it easy”…
Over 10 years of “do some yoga and meditate”…
Over 10 years of “maybe you should talk to someone”…
Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s part of the life” “You are lucky you’re young… wait until you’re older”….
Over 20 years until I got real answers…
I did not get answers until I advocated for myself. I did not get answers until my local doctor dropped me because I chose not follow her suggestions. I did not get answers until I chose to go to Boston. I did not get answers until I demanded them.
I am not writing this for sympathy. I am not writing this for attention. I am writing this to raise awareness for ANYONE that might have to go through what I’ve been through. I am writing this because I do not want a single woman to wonder if she’s going crazy or imagining things or to wonder why she is not being believed by “doctors”. I am writing this because I want DANCE EDUCATORS to be more aware.
After being referred to a geneticist by a brilliant rheumatologist/dermatologist in Boston, I know now that I have Ehlors Danlos Hyermobility type. hEDS is a connective tissue disorder that people are born with causing widespread muscle and joint pain, joint subluxations, joint dislocations, easy bruising, extreme fatigue and a variety of other comorbidities. A popular comparison in medical research right now states hEDS is “patients have a body that is like building a house with half the wood it needs to stand.”
Joint Hypermobility is common and when it is benign (doesn’t cause pain) there typically isn’t any cause for concern. When the hypermobility causes pain, and when a variety of you’re issues can’t be connected, doctors look further to determine the root cause and treatment options. Well… they should anyway.
My bones hurt… my muscles hurt… I have POTS… I can’t eat much besides what comes directly from the ground, so much makes me sick, I have exercise intolerance, I have two careers as a dance educator…and I am not supposed to stretch? Wait, what?
Since connective tissues make up the entire body, I learned that hEDS can effect pretty much anything— heart, muscles, joints, dietary allergies, hives, migraines— you name it. Those issues are considered to be comorbidities of hEDS which is why I was given a team of specialists for every issue to be dealt with individually. For instance, I have a form of dyautonomia called POTS (postural orthostatic tachycardia syndrome) commonly associated with those who have hEDS— where I see a cardiologist and soon a neurologist. On a regular day my BPM will go from 70-80 BPM to 150-200 BPM or higher (depending on the heat/ other circumstances) upon standing from sitting or laying. Unfortunately, my BPM hangs out that high, or increases, until I can sit down again and it makes me super dizzy, nauseous, raises my histamine and causes MIGRAINES to name a few (for those of you that have migraines… check it). On good days, I can manage it by pacing myself, medicine and sitting (which really isn’t in my line of work)…the bad days….I can be at 200 BPM standing / 130 BPM sitting. It’s like being in spin class for your total daily hours! Actually, standing is my cardio which explains why my body would freak out when I exercised at high intensities on top of everyday things …… because I am basically always running marathons…. enter-> exercise intolerance. What? Is that even a thing.???? YES! How long has it been going on? At least 6 years…. How did they miss this? Doctors don’t check your BP/ HR standing ….where this issue is postural and the EDS hadn’t been discovered yet, it went undetected and misdiagnosed until I found it MYSELF. Advocate for yourself.
Since connective tissues line the entire digestive system, my hEDS also effects my stomach. For years I’ve had stomach issues and unknown food sensitivities and the local “doctors” literally told me to rest. After a few years of constant pain, I decided on my own to go gluten free. It helped decrease inflammation in my body and makes me feel SO much better. I recommend it for everyone with stomach issues… However, as with all other comorbidities of hEDS, new things can develop and old things can change. I have to be careful with dairy and high histamine foods now too. Sometimes I react in the form of hives, nausea, a migraine, all of them or new ones… sometimes I don’t. Depends on the day and the circumstances. This might be a good time to mention that POTS and the digestive issues can be misdiagnosed as anxiety/panic attacks because of the similarities. Advocate for yourself.
There is no cure for hEDS but each aspect of it can be managed by individual specialists and medication. I don’t know what else I may have to deal with but there is an enormous sense of validation and relief when brilliant doctors finally recognize what you have been dealing with for over a decade and that truly is enough for me. Advocate for yourself and don’t settle for anything less than what you know is true.
The real importance here has NOTHING to do with me or what I’m dealing with….
Help me raise awareness for Hypermobile Ehlors Danlos … in the DANCE community. As a dancer, I have been flexible my entire life. The difference is that my “flexibility” was a result of joint hyperextension rather than a result of true flexibility. As with most hEDS kids, I experienced joint pain and tendinitis back to elementary school. Doctors just assumed it was overuse and sent me on my way with “rest” as their advice when in reality I was actually dealing with a connective tissue disorder that wasn’t diagnosed properly until I was 33 years old.
Dance educators NEED to protect and advocate for their students by recognizing the signs of hypermobilty in their “joint bendy” students. If these “joint bendy” students exhibit widespread or random pain/ issues, encourage the families to seek out an early diagnosis. “When you can’t connect the issues, think connective tissues.”
Diagnosis doesn’t get you a cure (because it doesn’t exist) BUT it DOES get you validation and direction for specialists in the field that can help. Oh, and Brigham’s Boston is where it’s at… skip the local offices for this diagnosis. Dancers in any pain—>see Dr Micheli at the sports medicine and dance clinic at Children’s 🙌🏼
If you aren’t sure what “joint bendy” might look like in your dancers, ask me..I’d love to help. It is so important that dance educators STOP forcing children into stretches, splits, and contorted positions. Let me say it again for the people in the cheap seats…. Cut it out! ✋🏼 Our students only have one body and forcing them into unnatural positions could be causing them permanent damage and a lifetime of discomfort. 🙅🏻♀️
Help me spread the word! 🦓
Check out the link for more info!