Written By: Corrine
As a kid I was always very flexible and got a lot of injuries. Many times people would say I was faking or just that I “break easy”, after I while I started to believe them. I would tell myself I was being dramatic, and that just made things worse. I started getting chest pains around when I was in 2nd grade, and my parents always said if they got worse we would go see someone. Of course, this never happened, so I stopped saying anything about it. I fainted for the first time when I was about 10 years old, and still, no one thought much of it. My symptoms became normal to me and everyone else, and I stopped paying any attention to them for years until I was hospitalized.
Midway through 2021 I was hospitalized for anorexia. When I got to the hospital my heart rate and blood pressures were all off, but not in a typical way for malnutrition. My resting heart rate was very low, but I was tachycardic (high heart rate) when I stood up. My doctors asked if I had ever fainted or gotten dizzy before. Long story short, I was diagnosed with POTS. I passed out daily when I was in treatment, and still none of my doctors tried to manage it. The main priority at the time was still my nutrition, but after a year I finally got to a good place with that and could start focusing more on other aspects of my health.
For the past few months I’ve been working to figure out my symptoms and how to manage them. Many new symptoms have also emerged, so I’m currently trying to figure those out as well. I saw a few different doctors before and after being in the hospital who continued to invalidate my symptoms and diagnosis. Many would say it was just anxiety, or that my POTS symptoms were a side effect of my past malnutrition. My current PCP is amazing and she is working to get me set up with a few specialists. We’re looking into EDS, MALS, and MCAS. Being a connective tissue disorder, EDS can affect all parts of the body and have many comorbidities. These can include Postural Orthostatic Tachycardia Syndrome (POTS), Median Arcuate Ligament Syndrome (MALS), Gastroparesis, Mast Cell Activation Syndrome (MCAS), Chronic Fatigue, Dysautonomia, and many other conditions. The biggest block for me is still resistance from my parents and other medical providers. My symptoms are still dismissed or downplayed very often, and this has made it hard to make progress on a diagnosis and symptom management.
