My story, like many others, began in Facebook groups while trying to network and figure out what my symptoms and lab results added up to.
I was diagnosed with anxiety and depression, low vitamin D, possibly arthritis, maybe fibromyalgia, anemia, “blackouts and fainting that could be diabetes.” It never was. I received a Dysautonomia diagnosis when I was 22, my TILT test ended with an epic fainting seizure. My journey from there involved Endometriosis and surgery, hypermobility, and trouble producing clotting factors. It was my last child’s birth (a surprise breech presentation) that landed me unable to walk for weeks without pain. How does someone have so many health issues in one body? I was 28, and three pregnancies later, when I finally received my Ehlers-Danlos syndrome (EDS) diagnosis.
I would be lying if I said I had all of the support I needed/need. I was disbelieved and asked for proof when I asked for help. I crawled around my home caring for my kids. My greatest barrier to diagnosis and support has been a lack of understanding about this genetic disorder.
Finding new doctors and all of them insisting that we run the same tests. Maybe they will be the ones to find what autoimmune condition I had. Maybe they would find diabetes (because POTS ‘just isn’t a real thing’). Maybe they would be the one to convince me it was psychological. Maybe this diet, or that therapist… I felt gaslit by the medical community. EDS was just this unicorn diagnosis that was too big of a stretch *pun intended* for their imaginations. Too many doctors, it’s more likely that we have buried trauma that’s the root cause of our discomfort, even with visible proof like needing braces for my legs and shoulder or having over two dozen dislocations per year.
I no longer waste time exploring my diagnosis with generic doctors who haven’t done their own research on EDS. I am raising three small children who likely share some of my defective collagen genes, and I intend to give them a better future than the experience I’ve had up to this point. They will be believed, they will be supported, and they will have more answers…. because we will not rest until we find answers.
