Doctors Didn’t Believe Me | Beyond Diagnosis | Chasing the Cure

[@phoebelouise7076]

I have EDS and POTS and didn’t get diagnosed till I became wheelchair bound.

[@dianemacdonald6997]

I was diagnosed with Ehlers Danlos Syndrome last year. I was fortunate to have an anesthesiologist recognize my symptoms as a connective tissue disorder, and then have a GP who had done his residency with a specialist in complex chronic disease, who knew enough to ask about my medical history and hypermobility to confirm Ehlers Danlos Syndrome specifically. Right place, right time, right set of symptoms flaring at that moment in time. While I have been living with symptoms most of my life, and up until last year was unable to figure out what was wrong, I was lucky enough to have doctors who took my health complaints seriously, never doubted me, and so have had assistance in managing symptoms. I have not needed a diagnosis to receive care. I live in Canada, and have not had to pay for any of my many many many doctors, specialists, tests, procedures. Medications have occasionally been quite the expense, when I didn't have extended health coverage through school or work. But for the most part, I have never had to worry about the financial aspects of my illness beyond finding employment that would work with my limitations.

[@chasingthecure]

Thank you for sharing your story with us, Diane. We wish you all the best.

[@Sakana_Ren]

I hear you. I have a common medical condition. However, it took decades before I finally got a proper diagnosis. By then, the damage is widespread. And, a local specialist offers surgery, but private insurance refuses to pay for it. So, I would have to pay tens of thousands of dollars out of pocket. And, he admits that surgery isn't the cure. So, so frustrating.

[@Michael_RareZebra]

I have Ehlers-Danlos Syndrome, Dercum's Disease, MCAS and recovered from Cushing's Syndrome. Diagnosis is a tough road - and sometimes even tougher thereafter. Thank you all for looking great yet being invisible illness warriors!

[@chasingthecure]

We admire your strength. Thank you for sharing!

[@snowaier]

I have Chiari Malformation type 1. Was 12mm herniated before the brain surgery. The pain was non-stop and horrific. Post surgery I can live some kind of life, but still in pain daily.

[@chasingthecure]

We're so sorry to hear about your condition. Wishing you all the best.

[@Faesharlyn]

*waves in zebra* Christina, your channel has helped me so much, thank you for sharing your story : )

[@chasingthecure]

That's great to hear! We are happy to connect this community.

[@amanda_ruck]

I have EDS too

[@lauren3596]

❤️❤️❤️

[@splashious]

YEEEAAAH JAKE!!! #LymeDiseaseAwareness