37. Advocating for Yourself with Aidan Leslie

Navigating medical care can be a daunting task at the best of times, but when you have a chronic disorder that is largely an invisible illness, you may find yourself bewildered and frustrated trying to get the care you need. Often, a diagnosis like Hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder can come with co-morbidities such as POTS (Postural Orthostatic Tachycardia syndrome), MALS (Median Arcuate Ligament syndrome), MCAS (Mast Cell Activation syndrome), and more.

And with multiple diagnoses comes multiple doctors’ visits.

Bendy Bodies chats with our own wellness ambassador, Aidan Leslie, a retired dancer who has been living with an hEDS diagnosis for the past five years and spending her fair share of time in doctors’ offices.

Aidan opens up about the bumpy road of her own health journey. She talks about hitting the “EDS wall” and fighting to take control of her life back. Aidan speaks frankly about her experience navigating the medical world, both as a minor and as someone with an invisible illness.  Aidan offers tips on how to prepare for medical appointments and suggestions for “how to push back against the push-back”.

And just as Aidan is willing to share her side of the medical experience, Bendy Bodies founder Dr. Linda Bluestein joins in to give advice from her side of the stethoscope.

Dr. Bluestein describes a medical one-sheet and how to build one for your medical care, and shares what she wants teen patients specifically to know about advocating for your own health. Dr. Bluestein discusses options you might have if you feel unseen or unheard in an appointment, and suggests ways to connect with a doctor during an appointment.

Filled with excellent insight from both sides of the prescription pad, this episode is one you’ll want to listen to with a notepad handy.

#spoonie #chronicillness #ehlersdanlossyndrome #ehlersdanlos #hypermobility #chronicpain #pots #heds #ehlersdanlossyndromes #mcas #invisibleillness #hypermobilitysyndrome  #hypermobilityspectrumdisorders  #zebrastrong  #bendybodies #BendyBodiesPodcast #JenniferMilner #balletwhisperer #hypermobilitymd --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

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