The Six Moments You Most Hated Being Undiagnosed

January 1, 2015

That life-long, never-ending diagnostic odyssey you’ve been on for 8+ years? Yeah. You’re pretty much over it by now. Some people may think hunting for answers is a waste of time or a symptom of hypochondria. But between your weird and often life-threatning symptoms, you could care less what people think at this point–unless they’re a geneticist with your full genome sequencing results.

Here are the six moments you’ve most hated being an undiagnosed patient.


1. When the urgent care doctor thinks he can diagnose you in 15 minutes. What is this some kind of game to you?



2. When the doctor thinks your wanting to order a few more blood tests is “overkill.”



3. When you keep running into the “blanket syndrome” diagnosis that you know you don’t have.



4. When you realize there are seven thousand known rare diseases–and only one genetic counselor in your entire tri-county area.

Where to Start

5. When your friends and relatives tell you that you should spend less time at the doctor, without realizing that will probably lead to more time in the emergency room.


6. When you’re worn down, fed up, over-tired and under-medicated for a disease you can’t figure out--and you realize that the only support groups out there are for cancer, mental illness, or for people who have already been diagnosed (but this meeting is usually out of your state anyways.)


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