If I were to ask anyone who lives with a chronic health issue to make a list of places that they try to AVOID AT ALL COSTS, I believe I could safely bet my monthly salary that their local EMERGENCY ROOM would be at the top that list. Not only because of the absurdly long wait times, and the potential exposure to who knows what kind of disgusting germs that could be floating around. But also because we are often treated like drug seekers because the providers simply don’t have enough understanding of our conditions. Yes, I realize that is giving those providers an easy out. But it’s true. The providers who work in Emergency settings take courses and are well versed in acute issues, like heart attacks, strokes, appendixes that need to come out, trauma victims, etc. While it would be nice to make them take more courses on chronic conditions like we have, it’s just not practical. This is where I may lose you but stay with me. This is actually where WE come in! I know what you are thinking, “How can we possibly help the providers help us when we are ill enough to need to be seen in an emergency room?” Don’t quit on me yet, keep reading. I promise the 10 tips I am about to share with you will help you to aid the provider and will hopefully make you next h a little easier.
Just a reminder that I can’t tell you when you should seek medical attention or when you should stay home but I can offer these tips that will hopefully help you have a smoother trip next time you go.
Top 10 Tips To Help You Have A Better ER Experience
Wear A Mask
If you are a patient who is immunocompromised you should ALWAYS wear a mask when you are in any providers office waiting room, especially in the ER waiting room!!! Any space where there is a large amount of people in a small space is grounds for wearing a mask. Especially the ER waiting room where most people crammed into said small space are sick and vomiting, coughing &/or sneezing without covering their mouths. So #WEARAMASK
Your Behavior Can Make or Break Your Whole Experience
If you come into the ER saying you feel awful, you’re nauseated, haven’t been able to keep anything down in days, you are so very light sensitive (wearing sunglasses) and your headache pain is a 10. But yet you are laughing and joking with friends, using your cell phone and downing mcdonalds, something doesn’t add up. So your story needs to match your appearance, especially if you are asking for anything for pain. Please don’t misunderstand what I am saying here. Don’t lie and pretend that you feel bad just to get the medications and then go back to the above mentioned behavior because that will get charted and that will impact how you will get treated later in this visit as well as at future visits.
Make sure that you have a regular physician that treats your condition/pain.
It looks really bad to an ER provider if you are presenting to them with an exacerbation of your condition or high pain level but have never taken the time to see a physician outside of the ER about it. The ER cannot and will not treat your condition on a regular basis, so get yourself at least a PCP who can refer you to the proper provider.
You should talk with your regular doctor who treats your issue (ex. Migraines) about how to approach ER visits
Make sure you and your PCP have an understanding of what symptoms indicate that you would indeed need to seek medical care at the ER and which would indicate you would stay home and see your PCP when they are open next. Also, discuss with your provider what treatment options would be appropriate and which would be okay to refuse while you are in the ER. Basically having this discussion prepares you for what may or may not happen should you need to present to the ER, and also gives you the knowledge base you need in order to be your own advocate.
Bring a copy of current and VALID medical records including medications
When presenting to the ER it is never a bad idea to bring the most updated VALID ( what is going on with this visit), updated medical records. This can be done on paper or electronically. However, if you have been seen at the same facility exclusively and all their records are electronic you probably do not need to do this, but if it makes you feel better then feel free. However, if you are being seen at a new facility it is definitely a good idea to bring your most recent records and medications list because when you are ill you are not likely to be the best historian.
If you are presenting to the ER with a chronic pain condition, bring a letter from your physicians n who prescribes your pain medications
It may seem like overkill, but if you can, bring a letter with you that includes the diagnosis, reason you are taking pain medications, and treatment plan regimen. As well as the physician’s name and phone number so the ER provider can get ahold of them should they need to. This is mostly important for if you are traveling or being seen at a facility that is not your normal clinic, where the doctors wouldn’t have medical records to see why you are taking the medications that you are taking. Bringing this letter helps the provider to know that you are likely not just coming to their ER looking for medicine. It shows that you are likely presenting with a real issue that they need to look into.
Bring research on treatment that has worked for you, if it is new and may not be as familiar to all providers
This can be helpful to prevent any assumptions that you are there drug seeking and that you are actually seeking treatment. For instance, research has recently shown that a VERY LOW dose of Ketamine, which is usually used as a tranquilizer has been very effective for migraines. Most providers are not aware of this unless they are familiar with migraine research. So if you are presenting to an ER for help with an unrelenting migraine, it could be helpful to have this research in hand in case the other treatments they try do not work. This is not something I would break out and throw in their faces out of the gate but would present if their treatments do not work.
If you have a very rare condition bring the ER staff information about your condition. This can help the staff so they can brush up on the condition and they also feel like you as the patient is trying to help them out and get them so they are likely to go above and beyond to help.
8. Bring someone to advocate for you, if possible Chances are if you are to the point that you are needing to go to the ER you’re not well enough to fully advocate for yourself. So you should always have someone with you who can fully advocate for you, if possible. I don’t mean someone who will just be able to say that you need help. Rather I mean someone who knows your condition as well or better than you and knows exactly what you will need to make the situation better. As well as what has worked in the past and what hasn’t.
9. Bring The Overnight Bag, Just In Cast
You never know when an ER visit will change from a “quick” visit to an overnight or even three-night stay., So anytime you head into the ER you should always bring your overnight bag, If nothing else for entertainment while in the ER. If you should end up admitted you have all the comforts you need while you are an inpatient.
10. Be willing to work with your provider
Do NOT be one of those people to yell and scream at your provider. These poor people have seen things all day that you wouldn’t even begin to imagine. They shouldn’t have to be yelled at by you simply because you don’t like their treatment plan. As much as it seems not fair, the more you yell at them about needing pain medication or whatever you are screaming at them about the less the staff responds to it. So if you can find a more positive way to get your requests across the happier you will be in the long run.
No matter what we can never stop the fight for our own health, whether we are advocating for a diagnosis or for fair treatment in the ER when we present with an exacerbation of a chronic illness or of our chronic pain. No matter what we have to remember along the way that the fight for us cannot put others down. Even though we may not always agree with the way we are treated in ERs across the country (or around the world) we can’t take the low road and put those providers down. We need to follow tips similar to those discussed above and take things into our own hands and change the narrative. We need to change how the ER visits are done everywhere. Simply complaining about the poor care we got at a recent ER visit is not going to do anything, We have to stand up and make the change. That being said…..
I want to put out a CALL TO ACTION to each of you reading this.
******I want to know if you have put any of these tips (or any similar tips)into action and how it went. OR if you have had any BAD experiences where you wish you would had tips like this to put into action to see if they would have helped.******** I want us all with chronic illness/chronic pain to change the narrative because it’s ABOUT DAMN TIME TO MAKE THE CHANGE.
4 thoughts on “Tips For Getting The Best Care | From ER Providers When Chronically Ill”
I’m guilty of saying i’d rather die than go to the ER again because of the horrible treatment. So, thanks for the tips, they’re definitely needed.
I know what you mean!!! You are welcome!!!
I either pulled a muscle or had inflammation around my rib cage from coughing for the past 3 weeks. I refused to go urgent care and doctored myself over the weekend until I could see my pcp.
ouch!!! That sounds awful!!! Did you finally see your PCP? How are you now?