Dear Doctor That Listened,
First off, I’d like to thank you. Unfortunately when you have an invisible illness, especially one that’s not well known, it’s easy for physicians to assume your patient in the ER is dramatic or lying to you. But you were different than the dozens of other physicians that I’ve encountered. You were genuinely concerned. You took the time to ask me what works for me and what you can do to help me get better. You didn’t pretend to have all the answers. You didn’t pretend to know much about Ehlers-Danlos Syndrome. You didn’t pretend that the dislocation I had was a common thing for normal people (because FYI, a posterior shoulder dislocation is super uncommon.) You believed me. You gave me the medications I told you I knew would work. You made me a part of the plan to get me better. You were an advocate for me. You asked for help from other physicians to make sure you were giving me the best care possible. You were kind and compassionate. When I told you I don’t need a prescription for pain medication because I don’t like to take it, your answer was “I am giving you one just in case.” And most importantly, you actually listened to me. So again, I thank you.
One of the most difficult things in living with EDS is that a lot of doctors have trouble with their ego so when they come across someone with a condition that they “haven’t heard of since medical school” (an actual quote from one of my doctors) it’s difficult for some to set aside their pride and ask for help. They forget that one of the most important things as a physician is to listen to your patient. We know our bodies. And when it comes to having EDS, I can promise you we really know our bodies because we have to. We are more in tune with them then your average person. We only come into the ER when we absolutely have to. Telling me “well if you’re shoulder dislocated so easily, why won’t it go back in that easily” isn’t helping. Assuming that I’m not in pain because I’ve had this happen so many times that I now can generally keep my composure isn’t helping. Telling me I’m wrong after not taking the specific x-ray that I told you was necessary to see it isn’t helping. Taking all the extra time to take even more x-rays to then come in my room and sheepishly say, “oh you are right” isn’t helping. As sad as it is, I’d say at least 50% of the ER doctors I’ve encountered act this way. Their pride is more important than their patient.
So again, doctor that listened, I thank you. I thank you for being the best physican you possibly can even when that means asking for help. I thank you for swallowing your pride and admitting you don’t know everything. I thank you for remembering that just because you hear hoofs doesn’t mean it’s a horse, sometimes it’s a zebra. And lastly, I thank you for not downplaying my invisible illness and treating me with the kindness and compassion that every one of your patients deserves. You have impacted me far more than just reducing my shoulder dislocation, you’ve helped me remember that there are still good physicians out there who will always do whatever they have to in order to help their patients.