I did not get answers until I advocated for myself

Posted November 11, 2019

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 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 hypermobile Ehlers-Danlos syndrome (hEDS). 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. Since connective tissues make up the entire body, I learned that hEDS can affect 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.

I have a form of dyautonomia called PoTS (postural orthostatic tachycardia syndrome) 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, and causes migraines to name a few. On good days, I can manage it by pacing myself, medicine and sitting (which really isn’t in my line of work). On 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 intensity 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 didn’t check my 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.

My hEDS also affects 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. 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. It 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.

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.

Help me raise awareness for hypermobile Ehlers-Danlos syndrome in the dance community. As a dancer, I have been flexible my entire life. I experienced joint pain and tendinitis in 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 students. If these 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.

Help me spread the word in the dance world! #safedancepractices

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