Aimée has been experiencing chronic pain and increasingly debilitating neurological symptoms throughout her life. She was first diagnosed with fibromyalgia at just 12 years old, at a time when that diagnosis carried little to no actionable recourse and significant stigma. Due to a lack of helpful doctors in the face of progressing symptoms, she took it upon herself to learn as much as she could about medicine and healthcare in the hopes of finding her own answers. She sought help from every source she could find, including a private doctor who’s practice took no insurance and charged out of pocket for every test. That doctor diagnosed her with a laundry list of conditions, but admitted to Aimée that he was out of his area of expertise and had no idea what she should do next.
In episode 31 of the Major Pain podcast, Aimée shares her medical journey and some of the knowledge she has gleaned along the way about the American healthcare system. Over time she has been diagnosed with fibromyalgia, Lyme disease with associated co-infections, Epstein-Barr virus, chronic pneumonia, chronic strep, narcolepsy with cataplexy and Ehlers-Danlos Syndrome. However, her various doctors have disagreed over some of these diagnoses, and she is still fighting to be taken seriously and receive the care she deserves. Even with genetic testing that clearly indicates Ehlers-Danlos, finding a doctor willing to help manage her symptoms has proven elusive. She shares the deep frustration of experiencing medical gaslighting from a variety of sources, while also expressing empathy for doctors who’s hands are tied by healthcare rationing. Through all the ups and downs she has experienced, Aimée’s deep desire to find answers for herself and her children pushes her to keep fighting.
Our fist bonus episode of Major Pain featuring Jesse and Andi is now available to all listeners supporting the show on Patreon! Sign up at any support tier to gain instant access. Find the bonus episode at this link: https://www.patreon.com/posts/58226393
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
Podcast: Play in new window | Download
Subscribe: Apple Podcasts | Google Podcasts | Spotify | Amazon Music | Stitcher | Email | RSS | More