Random thought: do you think it’s strange that doctors treat conditions that they have never experienced and then tell the people with the condition that they don’t know what their talking about… I will now be using this logic on every doctor that try’s to dismiss me.

Ehlers-Danlos Syndrome (EDS)

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  • BloodOrange


    No- i think people including doctors can be knowledgeable about things they haven’t personally experienced/ given they are provided with adequete education and training. Unfortunately when it comes to Ehlers Danlos the majority of doctors have not been given the proper education or training to properly or adequately recognize it, diagnose, or treat. And the patients suffer

  • MangoPeach


    Its incredibly hard to get through medical school, let alone get through it with a rare genetic disorder

  • MedMysteryMama


    I feel like by saying “haven’t experienced” you mean more along the lines of don’t have experience treating it rather than actually experiencing it personally. I’ve fought chronic illness for about 10 years and almost every treatment has failed for all of my chronic illnesses and I’ve learned that doctors have quite a complex despite most of them meaning well. When usual treatments fail for their patients, they take it personally and put it off on the patient as if the patient doesn’t know what they are talking about as in a way to deflect blame when in reality there is no blame to place. It’s not the patients fault treatments fail nor is it the doctor’s, but simply a fact of the matter and doctor’s need to realize that. Like I’m so sorry my body hurt your feelings by rejecting your plan of care, but I do not control that and your emotions are not responsibility to bear.

  • Sigil


    My best doctor experience came from my rheumatologist when I went in to try and get my EDS diagnosis. She immediately told me her sister had EDS and that my experience sounded the same and that she would help me. It's been almost three or four years since that and I'm so grateful to have her in my corner. She's been the best doctor I could have hoped for because she knows and loves someone who actually has this.

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