We all wish sometimes that people knew our history so there is less explaining, but this wish becomes all too true when you fight chronic illnesses and are headed to the ED. Recently I was admitted into the hospital and while I was in the Emergency Department (ED) waiting to be admitted I started thinking. I started thinking about how life would be different if doctors could know about me before meeting me. So here are the 5 things I wish doctors in the ED knew about me before they decide they know my body better then me.
1. I have tried absolutely everything I could to avoid coming in here- I didn’t try here first
When I head to ED, something is very wrong. We do not go to the ED for a good time despite what people might think. When we make the decision to head in to the hospital it means that we have tried absolutely EVERYTHING in our power to get the situation under control at home. We have tried every medication we have in our arsenal, we have tried every brace, and we have done everything to keep my body out of your hands. We know that going in means that most likely we know what my body needs, we just don’t have the tools at home to fight it (and if we don’t know then we are really concerned.) Ultimately, if you knew me already you would save everyone some time by not asking me why I didn’t try xyz before coming in- because I can guarantee that I did try it.
2. I fight rare diseases and you need to listen to understand them
Yes everyone at a hospital is trained and educated, but most do not understand my fight and my body. Now I already know and expect that people do not understand my fight. That’s why I go to my hospital for anything and everything because we know they can pull up my entire record and page my teams (which is always necessary.) BUT that does not mean that even with all these tools they will understand my body. We always have to explain and for sure, always have to advocate for my body. We are typically in the ED for a POTS flare and I need a couple liters of saline. Some doctors do not believe in POTS and others believe in it, but don’t believe in saline treatment for POTS. Even when we know that treatment works, and after a couple liters I will feel so much better- and my quality of life improves for 2-5 days after receiving an infusion! So it would save us a lot of time if doctors knew to listen to understand when we talk to them.
3. I am patient with feelings and not just another number (sometimes doctor’s need to hear that patients are also people)
One of the things that I think gets forgotten sometimes is that patients are people. At any ED you go in and are assessed by medical necessity. To be honest I don’t typically ever go back to the waiting room after triage, but rumor has it if you aren’t really sick you typically go back and sit in the waiting room (lol.) Anyhow sometimes because doctors and nurses are assessing life and death situations they get a “chef mentality” as Jared likes to say. He always thinks of it like when a chef is rushing service to just get as many dishes out as possible. While we understand that, we also need doctors to remember that when people come to them in ED they are at some sort of loss. Loss of ideas, loss of plans, and loss of knowledge. The hard part is when they forget and dismiss that loss, as occasionally, a waste of their time. It would be great if doctors knew that I was a person and always remembered that when I (and anyone) is in their care.
4. Yes, you have to have the IV team come and do my IV under ultrasound. No, you cannot just try to get it yourself.
This is a constant struggle we face in the ED. I don’t have many problems with the RSD/CRPS anymore but anything going into or coming out of my body that is foreign, if not done with patience and proper care will send me into a flare. I can only be pricked in one arm due to PTSD from almost dying (it’s a long story so lets just leave it at that.) Even if that wasn’t the case due to the EDS, I am not the easiest to get a PIV in as my veins like to roll and when I am dehydrated-which lets be real it is hard to stay fully hydrated withs POTS and severe nausea- it makes my veins all but disappear. Anyways, because of all that, I have become a very hard stick. We cannot afford to have someone try and miss or blow a vein because I only have a few that will hold. Whenever we come in and need an IV for that specific treatment plan for the day we have to call the IV team. Nurses also get offended when I “won’t let them look” because I know that they will not be able to find anything; if they could I would totally let them and not wait for my IV for sometimes up to an hour. Since I have become good friends with the director of the ED people give us less crap, but we still always have to fight for them to be called. It would be great if the ED already knew that about me (even though it is highlighted in file. *eyeroll*)
5. Jared is my health care proxy, and if he is advocating for me or speaking for me there is a reason- please listen to him and respect him
The amount of times Jared is overlooked is ridiculous. I am not always able to be my own advocate. Sometimes I need a stronger voice of a sounder mind. I don’t know if other couples deal with this, but I think as a patient- and also as a woman- people like to assume that Jared is “talking for me” and I need more of a voice. This is not the case. If Jared is talking for me, there is a damn good reason. Jared also always has great ideas and solid input to every health conversation and deserves to be treated with the same respect I am given. There are times that I am too medicated, too tired, or quite bluntly not together enough to be talking and I need him to step in. If doctors knew that he is my main caretaker and knows more about me than I do at times that would make my life much easier when I have to go to the emergency room.
Now while I wrote this post on what I wish they knew, I wanted to follow up with 5 things that every ED staff wishes we knew about them. I got some insight from the teams while I was there, because just like they work to support us, we need to work to support them:
- We are not their only patient.
- They have lives too and sometimes everyone has a bad day.
- We don’t know what they were just dealing with or who they lost- always be kind.
- They can’t know everything about something they haven’t heard about… so yes we need to be educated and be educators on our illnesses.
- They ultimately do what they feel is best for us (even if it is not) based on what they know and do not try to harm us.
I want to give a shout out to all of the amazing EMTs, nurses, doctors, and care coordinators that work so hard around the clock to keep us safe. Overall I have had good care from the ED staff at my hospital and I am so thankful for them. So to everyone on any ED, we appreciate you. Thanks for already understanding that you are seeing us at our worst, and we wish