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The irony of living in close proximity to Boston, MA, a city known for its medical advancements, is that with all the world-renowned care I sought, it still took over 15 years to finally have some answers.
My name is Victoria, and I am a 26 year-old full-time Doctor of Pharmacy candidate in an accelerated program working part time in a pharmacy, and I have hEDS. As a future medical professional who seeks a career working for a pharmaceutical company developing therapies for rare diseases, I find it baffling that when I reveal my diagnosis to rare disease professionals, they’ve never heard of it.
“Well, you don’t look sick” is often what I hear. Meanwhile I’m just trying to keep from losing my balance because I stood up too fast excited about an educational opportunity, did not feel like fighting with my compression apparel that morning, and forgot my giant water bottle that I chug all day long to keep by blood pressure steady (aka trying not to drop it like it’s PoTS, am I right?) My response is almost always the following: “I’m just one of the lucky ones who can mask my pain and symptoms (most of the time), while many others have low to zero quality of life.” I explain that EDS is a spectrum and the manifestations are vast, varying in severity, but the source of anyone with EDS is that our collagen, hence every organ system from our skin, to our gut, to our nervous system malfunctions. Health professionals need to realize that appearing “okay” does not mean their patient is well.
I spent my childhood and most of my adult life battling dislocations, sprains, chronic fatigue, abdominal migraines, chronic nausea, cyclic vomiting syndrome, blood vessel pain, tachycardia, and pelvic floor pain all of which was chalked up to “mental” causes because all my metabolic panels, CBC’s, and enzyme levels were “normal”. I became used to the cycle of my symptoms flaring, another round of tests ordered, and another poorly articulated “I don’t know what to tell you”.
It was not until my skin started changing colors, 20 vials of blood for rheumatological tests, and a slew of negative results that a geneticist was recommended. I went into that visit low on hope and exceedingly full of anxiety. I’ve developed physician visit anxiety attacks from my journey with hEDS which left me nearly on the verge of tears with every answer I provided to my new doctor’s questions and throughout the entire physical exam. My anxiety, however, immediate left me when he said the sentence that changed my life “Well, I am very happy to tell you that so far you are text-book EDS. Now I just need one vial of blood and we can try to genotype you.” I sat quietly staring from shock until I finally mustered up the words “I’ve never been textbook for anything, thank you.”
It took me 15 years to reach this point where I have a diagnosis.
It took me 15 years to figure learn that I am, in fact, not making it up in my head.
It took me 15 years to know that it is not normal to be chronically fatigued and in pain.
It took me 15 years to find some symptom relief.
It took me 15 years to have a therapeutic plan of action.
It took me 15 years to see that light at the end of my dark 26-years.
It took 15 years too long.Tags: Chronic Fatigue, Coping, Diagnosis Journey, Dysautonomia, hEDS
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