Living with Two Invisible Conditions: Hypermobile Ehlers-Danlos (HEDS) and Autism

Brandy grew up knowing she was different. She struggled both socially and physically, having problems picking up social cues while constantly experiencing injuries and joint dislocations. When seeking help she was disbelieved, shrugged off, or accused of drug seeking behavior. Brandy tried to push through and be strong, but her body was infuriatingly unpredictable and constantly forced her to slow down. It wasn’t until Brandy got mad and started fighting for answers in her 30s that doctors finally helped her uncover two invisible conditions that had been hiding her whole life.

In this episode of the Major Pain podcast, Brandy discusses being diagnosed back to back with hypermobile Ehlers-Danlos syndrome and autism in her mid 30s. She says, “In general, getting those diagnoses were the best things that have ever happened in my life, to let me move forward with being who I really am on the inside, being who I am in my mind and in my heart, other than just a bag of defective bones.” After cycling through careless doctors and harmful misdiagnoses, finding answers has made her life significantly easier. She has learned the value of listening to her body, adjusting behavior day to day based on symptoms while letting go of impossible standards. Her diagnoses have provided a framework through which she can make sense of her journey thus far, and find positive, productive ways to look towards the future.

This week’s episode is sponsored by HandiCup! Head to handicup.com and enter the code ‘MAJORPAIN15’ at checkout for 15% off accessible beverage holders.

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