Ever wonder what goes through a a rare disease patient’s mind before they meet a new doctor? The worries? The fears? The hope? Here’s a sneak peak of the mental process:
- Please, please at least have heard of my disease before! There’s nothing quite so disappointing as walking into a new doctor appointment and having your physician have absolutely ZERO clue as to what your disease is.
- Please don’t try to re-diagnose me. I’ve been around the block a few times, buddy. A rare disease patient doesn’t get a diagnosis at the drop of a hat. I earned that diagnosis and I’m not having 2 MRIs, a catscan, 24 vials of blood taken, and a stress test just so you can be sure it’s not something else.
- What’s new? With most rare diseases not having a treatment (let alone a cure!) most patients are constantly wondering what’s in the pipeline that might be relevant for them. Are there new clinical trials? New off-label meds that worked well with other patients?
- Don’t humiliate me. Even if you don’t “believe” that my condition is real, or could cause such severe symptoms—please don’t blame me for things that are not my fault. If you’re uneducated about my disease—educate yourself! But don’t invalidate my diagnosis just because you’ve never heard of it before.
- Don’t lead me to a dead end. Even if you’re NOT the right physician for me—at least give me a lead on what my next move is. A different specialist? A special clinic? Even another doctor in your field who might know more can make the difference for me.