Living with POTS, HEDS, Rapid Gastric Emptying and More

Katherine has been chronically ill her whole life, but didn’t realize it until the situation became debilitating in college. She was always a flexible kid, able to twist, contort and bend in all sorts of unusual ways. In high school she started experiencing chest pain and heart palpitations, but was told it was anxiety or panic attacks. It wasn’t until her mysterious gastrointestinal issues kicked in that things became serious, as she found herself in and out of the hospital with constant nausea, dizziness, and difficulty keeping food or liquids down. While doing research on YouTube she stumbled on a video describing POTS (postural orthostatic tachycardia syndrome) and hEDS (hypermobile Ehlers-Danlos syndrome), both of which resonated with her experiences. She took this information to her doctors and was eventually diagnosed with both conditions, as well as dumping syndrome (or rapid gastric emptying) and rapid small bowel transit. Getting these diagnoses was far from easy, as constant medical gaslighting and the resulting self-doubt created endless barriers.

In this episode of the Major Pain podcast, Katherine discusses her tumultuous diagnostic journey and the lessons she learned along the way. The awareness she has gained around chronic illness has led her to change life goals, now studying to become a therapist for others with long-term disease. She reflects on how quality of life standards should be dictated by the individual, not by doctors imposing their beliefs upon their patients. Katherine has lived through horrifying hospital experiences where her care team refused to believe her complaints, leaving her feeling unsafe and trapped. She has gone through periods of grieving her body while struggling with energy depletion and mobility difficulties, being forced away from her passion of aerial performance or going out with friends. However, with her diagnostic picture becoming more and more clear, she has reached a turning point where medical intervention is finally providing some relief. She shares that while she doesn’t know what the future holds, she is focusing on staying in the present moment and making progress one day at a time.

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