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What Emergency Room Staff Needs to Understand About Spoonies

There’s nothing fun about being sick all of the time. Seeing doctors is a job — closer to a full-time one than you’d think. Most spoonies have many different types of doctors, and there are times it feels like we need a personal assistant, or a receptionist of sorts, to help us manage all of the appointments. We never know what to expect, or what our bodies will put us through at any time.

In our worlds, it seems no one knows how to help us. There are a lot of people who don’t even believe us. Not many people will truly stop and listen to what is really going on. It’s no different in the ER. Doctors and nurses either don’t know how to help us and don’t want to admit it, or they too, just like the rest of the world, may not believe us. They may think we are only there for the drugs and even mark our files to show drug seeking behaviors.

They don’t understand how long we agonized over our decision to go to the ER, because we have been down this road of disbelief many times before, and sometimes it’s too much to take. It’s almost not worth it, we might think. It’d almost be easier to suffer in silence. It’s not like we haven’t done that before. Let’s not even talk about how heartbreaking it is when our bodies are tearing us up inside and out and no one will help us. That’s a heartbreak no one should ever have to experience.

The medical staff doesn’t seem to understand what it’s like when we finally decide that our situation, is in fact, an emergency. It’s too much to handle alone anymore. For many spoonies, the pain that sends us to the ER is a pain dealt with for far too long, a pain that would have sent a regular person to the ER long ago. We go to the ER and we wait and we wait, and then we wait some more. A nurse and doctor will come in and listen for a few minutes, maybe make a hasty diagnosis of something we most likely already knew, and give us an equally hasty treatment of some sort, and then we wait and we keep on waiting. Eventually we may be sent home with a doggie bag of drugs that may or may not be of any help.

What needs to happen in the ER is for the doctors and nurses to look past the seemingly obvious and really see us. Maybe if they stopped and listened they would understand why this is upsetting. Maybe if they stopped to think how they’d feel if someone treated them indifferently. Try looking at the person before you with passion and care, not just a repeat offender or addict, or system abuser.

ER doctors and nurses, please try looking at your chronically ill patients as people who are desperately trying to feel better, because that is all we really want. Try guiding us in the right directions if you think we are headed the wrong way. Help us with how to talk to our primary care physicians so we don’t always have to come back. That kind of help would lead to less emergencies for us.

Understand that chronically ill patients and the constant-ness of our sickness are scary to medical staff — that you don’t necessarily know what to do if you can’t magically fix it all. Remember that it’s even scarier for us. Also understand that the ER is sometimes our only option.

So, ER doctors and nurses who dismiss their patients, or leave them for hours in blinding pain, come check on us once in a while when we are with you. Treat us like we matter.

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