The 5 Responses You Get in the ER When You Have a Rare Disease

1. “I’ve Never Heard of That”


Usually this is said in a confused tone and with some fumbling on their cell phone trying to look it up. Hey—at least they’re honest! It’ll never elicit a vote of confidence when your doctor hasn’t even heard the name of your disease, but at least they’ll admit to not being the authority on it. (This is a great time to give them the contact information of specialists you’ve worked with or to fill them in on what has been done for you in the ER before with this disease.)

2. “Of Course I Know What That Is!”


This is usually not a bad time to ask, “Just so we’re on the same page what is it exactly that you know about (my rare disease) and have you worked with many patients like me?” Don’t be embarrassed to ask. Too many times I gave the ER doctor the acronym for my disease Primary Immune Deficiency and they started treating me for Pelvic Inflammatory Disease.

3. “I Don’t Think That’s What You Have, It’s Probably Just Heartburn or a Panic Attack.”


Now this one just makes my blood boil. Firstly—because I’m in the ER, I probably am having a panic attack! But I didn’t just decide to the come to the ER so I could HAVE a panic attack. Sometimes even showing them stacks of papers with proof of your disease isn’t enough to sway the doctor into whatever normal treatment you use for these emergency situations. Hopefully you can find one of your specialist to intervene before you urges you to take another Pepcid.

4. “Okay, So What Should I Do?”


You can’t hate on these doctors too much. Even though it can make you feel a little like you’re free-falling. Doctors who turn to you for expertise on your own disease may be doing you a favor. They’ve admitted they’re lost and they expect you to be the one to tell them what you think will make things better. When you get to this situation, it’s best to stick to your main symptoms that have brought you here and go step-by-step on what the doctor thinks would be a good medical solution to each symptoms. Work as a team, agreeing and vetoing ideas until you find the right one.

5. “Wow. Tell me more.”


Some doctors just don’t let their ego overshadow their thirst for knowledge. May we always have doctors with this kind of reaction! They’ll be open to researching, reaching out to other doctors in a different specialty, and most importantly, he’ll make you feel confident that he won’t make a snap judgment about how to best treat you.


In past posts, I have given my favorite comments by others. My favorite was by the 911 operator and the ambulance personnel. The winner is: “HAVE YOU BEEN DRINKING”?