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To the Person Walking Out of the Doctor’s Office Feeling Hopeless About Your Rare Disease

key information

source: The Mighty

year: 2016

authors: Kaitlyn Brennan


Today I walked out of a doctor’s appointment feeling utterly crushed. I am not ashamed to admit that the meltdown that ensued due to this appointment began before I even left the office. Today I had a doctor tell me that nothing is wrong. Hearing that nothing is wrong when something is wrong is the worst nightmare for those of us that live with chronic pain. Yet, this is a very common occurrence in the world of invisible illnesses. I think the problem boils down to doctors not knowing about rare conditions.

The first thing the doctor said to me today was that he knew nothing about Ehlers-Danlos syndrome, which was the first sign of trouble. I continued on with the appointment hoping it would become better, but instead it became worse. After X-rays he came into the room to tell me nothing was wrong and pointed to my neck. The problem was that he was pointing to the wrong spot on the X-ray during his speech about my impeccable flexion and extension. I was crushed after the assessment. I knew that by him saying nothing was wrong it would mean living longer with extreme instability in my neck.

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