It’s safe to say no one enjoys going to the emergency room, but people with chronic illnesses have a few unique reasons for disliking the ER. One of the biggest reasons is because many ER staff members simply aren’t very knowledgable about their illness. ER doctors are trained to deal with acute problems like heart attacks, catastrophic wounds, and stroke, and likely have much less training in dealing with complications related to Lyme disease, for example, or Ehlers-Danlos syndrome. Chronically ill patients may not always get the care they’re really looking for (and deserve) when they go to the ER.
We sadly can’t force ER staff to take extra classes in medical school about chronic illnesses, and sometimes no matter what you do, you still might leave the ER disappointed. But a disappointing experience may spark an idea for a strategy that helps you get the care you need next time. After all, no one understands your body better than you. So we asked our Mighty community to share their advice for going to the ER if you have a chronic illness.
As Martin Downs wrote for WebMD, “When people take an active role in their care, research shows they fare better — in satisfaction and in how well treatments work. A passive patient is less likely to get well.”
We can’t tell you when to go to the ER and when to avoid it (you’ll need to speak with your doctors and specialists for that), but we can offer these tips that will hopefully help your next ER visit go smoother.
1. Talk with your doctor or specialist about how to approach ER visits.
First thing’s first: You should talk with your specialist or primary care doctor about what to do when you think you need to go to the ER. Make sure you understand what symptoms indicate you have to go, and which symptoms aren’t life-threatening and can be dealt with at home or by calling your regular doctor. Then, if you do end up going to the ER, make sure you understand what is an appropriate course of treatment and what ER doctors might do that should raise a red flag.
“Discuss with your specialist how to approach ER visits. My doctor was able to provide me with a list of certain meds/tests I should refuse if I’m being seen in the ER for my chronic illness. If I hadn’t had this discussion with my specialist, I’d probably have been exposed to a lot of unnecessary radiation by now. Your specialist will know best what kinds of things the ER should or shouldn’t do for your unique situation,” Amber Smith said.
2. Bring a folder (electronic or paper) with your most updated medical history.
ER doctors don’t know your medical history, so it can be really helpful to have all the documentation with you so you can easily show them proof of diagnoses, medications, past treatments and procedures, etc.
“I have a medical folder with all my updated medical info in it. And I have letters from each of my doctors and get them updated every year, so I have more than my voice. I also stay on top of my illnesses so I can’t be pushed around,” Ruth Holm said.
3. Take notes on what happens during your visit.
If you have a bad experience in the ER and want to raise a complaint, you’ll need to be able to report exactly what happened. If you can, bring someone with you who can take notes. You could also refer to these notes later if you need to remember medical instructions.
“Bring someone with you, and if you can write down the name of everyone you speak to, demand their names, write every word they say, bring a tape recorder if you can. If you can have whoever you brought do it for you and keep it on them. Funnily enough people are a lot more helpful once they realize you can hold them accountable,” Rosie Howard explained.
4. Bring information about your illness in case the doctors and nurses aren’t familiar with it.
The ER staff may not come across your illness much (if at all) and in some cases may not have even heard of it. Consider bringing a written explanation of your illness, the symptoms it causes and how it’s treated so you can help them understand your underlying illness.
“Keep an information sheet in your wallet that explains your illness(es) and try to be confident in explaining your illness, even if it’s undiagnosed. ER doctors are trained to treat acute injuries and illnesses, not chronic ones. They likely will need as much information as you can give them to help you in an emergency situation,” Liberty White said.
5. If possible, try to go to the hospital where you’ve received the best care in the past or the hospital affiliated with your specialist or doctor.
In some cases you may have absolutely no choice about which hospital you end up at. But if you can, try to go to the hospital that’s treated you well before. Or, see if you can go to the hospital affiliated with your specialist, which may make it easier for everyone to collaborate.
“If possible go to the hospital that your specialist is affiliated with. I also carry a copy of my most recent CT that confirms my diagnosis of chronic pancreatitis as my bloodwork doesn’t reflect it anymore. My hospital social worker is working on there being a care plan in place for me so that when I do have to go to the ER, I get the same treatment every time,” Melissa Lloyd said.
6. Ask your doctor to write a note that gives specific instructions and information to the ER staff, or ask him or her to call the hospital and speak with the ER staff.
Make it easy for ER staff to talk with your doctor by keeping a signed letter, including phone number, with you that explains what they need to know about caring for you. If ER staff isn’t taking you seriously, they may take your doctor seriously.
“Have your doctor write a letter with diagnosis and treatment of care, in case of emergency services, with the doctor’s name and cell number in case of an emergency!” Carol Lassaline Smith suggested.
“Ask if your doctors have a cell number you can call if you have to go to the ER, then have them speak to ER staff directly. If you take opiates and are worried about being judged, have your doctor write a formal letter explaining why you have them and that you’re a responsible patient,” Sally Fowler said.
7. Have a bag ready to go with items you may need and things to entertain yourself during a hospital stay.
You don’t want to end up in the hospital for days without essentials like your phone, charger, headphones, insurance information, medications you may need to take while you’re there, etc. In an emergency situation you may forget things, so keep a hospital bag ready to go.
“Always pack up a bag of your necessities. Each time I have had to go I always bring: Chapstick, eye drops (so dry there), extra socks (IV makes you so cold), bottle of water; if it’s for a migraine, a small towel to cover my eyes with, etc., insurance card and drivers license — never my entire purse. They are busy and can and do not bring you all that you need and never quickly enough. And, if you have the stomach flu/diarrhea — bring toilet paper. Trust me!” Kerry K. Swenson said.
8. Bring someone who can advocate for you, or ask for a patient advocate.
When you’re the patient, your focus should be on your health — not fighting for treatment. A trusted friend or family member can help advocate for you, ask the right questions, and follow up with ER staff if they’re not providing care in a timely manner. If you are alone, you can ask for the hospital’s patient advocate or social worker.
“If you have to, ask for the patient advocate. Have your partner or friend advocate for you,” Swenson said.
“Bring someone who is on your side. Who can help voice for you,” Amanda Brockman said.
9. Know the medicines you’re taking, any allergies you have, and any medications you might get in the hospital that could cause a reaction.
There are tons of chemicals and medications used in hospitals that might interact with medications you’re already taking or cause another reaction of some kind. Keep an easy-to-access record of anything that might lead to a reaction so ER staff can avoid giving it to you.
“Know your meds and how other meds affect you. For example, there are variations of the meds in the ‘migraine cocktail’ and I need the alternative to one because of a reaction I get,” Hannah Mason said.
10. Never stop fighting for your health.
Going to the ER can be a frustrating, discouraging process for people with chronic illnesses. But remember that no matter what happens, you still deserve to be cared for and to be taken seriously. Don’t let a bad experience keep you from fighting for treatment in the hospital or elsewhere.
“Don’t give up. You know your health. Don’t let the nurses or doctors dismiss you because they haven’t heard of [your illness] or because they think you’re over-reacting, a hypochondriac, addict, [etc.] Fight for your health,” Skylar Marie recommended.