What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)
A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.
A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.
Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.
Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable:
- Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room. Without this all-important steady doctor-patient relationship, the rest of this list is not really possible. In terms of seeking out aid in the Emergency Room for a spike or flare of pain having to do with an ongoing condition or problem, even having a bad doctor is better than no doctor at all. If you are having trouble finding a primary care physician who actually does care, the best place to start looking are local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, don’t be afraid to ask their staff where they would recommend going or if that doctor can make some recommendations of physicians they know to be effective at treating your condition. This search can take a while, but always keep a PCP on file, if you at all can. Not having a primary person who writes your prescriptions and handles your referrals makes the staff in an Emergency Room nervous no matter what.
- Show that you have tried to contact your regular doctor before you go to the ER. If you have been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is. Even if the pain struck out of the blue that day, make an effort to contact your regular doctor first. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them. At least you’re showing you made an effort and only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication. This is important, as unfair as it is, they will not give you proper care if you are using the ER too liberally. Having your physician back up your story is never a bad thing, it helps establish legitimacy and urgency, and can help push you through to getting treatment sooner rather than making your wait for four hours “just to make sure you’re really in pain” before giving you any medication or imaging.
- Bring a letter from your doctor. A letter from your physician, with a diagnosis and current treatment regimen, is a logical, completely reasonable thing to carry with you, particularly if you’re on a regular dose of opiates in today’s atmosphere of distrust and disbelief of pain patients. Always make sure the letter has your doctor’s name and phone number. That way, if ER doctors want to contact your physicians, they can. This is especially useful if you’re traveling or going to a hospital that you have never visited before.
- Bring a list of medications. Bring a list of your medications, instead of relying on memory. Usually the hospital will already have access to the list of everything that you have taken for the past several years, so don’t try to lie about it, you will only hurt yourself in the long run. Always be honest about medications you have taken or have been prescribed.
- Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. Being loud and distressed will call negative attention to your actions and makes hospital staff that much less sympathetic. You might be in agonizing pain, but the staff is going to be more concerned with “drug seeking behavior” than your well-being. So rather than demand things, try to work cooperatively with the staff, even if they’re not being cooperative with you.
- If you have an alert card or pamphlet explaining your condition, hand it to them and ask for it to be put in your file. For instance, I keep a card in my wallet explaining that I have Ehlers-Danlos Syndrome and detailing the worst parts of the illness and information that is pertinent to an emergency. I also listed my most severe medical allergies around the border of the card in big black block letters. It’s important for the staff to know what is going to cause more pain & what may help. If you have a rare condition or one that is frequently misunderstood or which is conventionally thought to not cause pain, bring a relevant pamphlet from an awareness or advocacy group with you. Consider buying one of the brand new USB alert bracelets, pendants, or wallet cards. These plug into a computer in an emergency if you can’t speak for yourself, and they can be uploaded with as detailed medical information as you want, from medical history and current doctors with phone number and addresses to info like allergies, current medications, current medical concerns, and alternative treatments/supplements as well. Most manufacturers understand that a computer might not be nearby in an emergency and have a phone number printed on the back of the bracelet that you can call to access the information as well.
- Ask for a nurse advocate or make sure someone is with you. This will help you when trying to explain things to the staff. It helps to have another person there to advocate for you.
- If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place. Plus, you might actually get doctors to take an interest in your chronic pain condition and maybe even other conditions that can cause a chronic illness patient to end up in the ER. Think about the ramifications that could have down the road for future patients!
- Finally, since there are a lot of easy-to-forget details in this list, especially in the fog/panic/blacking out that happen whilst in horrific pain, I like to keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me. It isn’t always updated with the newest things I’m taking, so I bring the bottles themselves if I am on anything different since the last list was written. Being organized shows the ER team that not only do you take your condition(s) seriously, but that you have done all you possibly can to avoid the Emergency Room and to only use it as a very last resort.
About two years ago I was turned away from an ER without treatment by an extremely ignorant physician (after toughing it out all night crying and screaming at home), I had to contact and be seen by my pain doctor the next morning and then was sent right back to the same ER, only this time I was told to have them call my pain clinic when I got checked in. I did not want to go back there, but things went a lot smoother the second time, despite my apprehension. I was given the correct sedatives for once, and no one yelled at me or gave me super judgmental looks. I was treated for pain, monitored, and released without being asked to pee in a cup or otherwise treated like an addict. It was the only decent Emergency Room experience I have ever had, other than being in constant, black-out, vomiting, excruciating, unrelenting pain for almost 48 hours prior to finally receiving treatment and not sleeping a single hour of that time, all from an Occipital Nerve Block injection that was supposed to be a diagnostic tool, gone horribly wrong. (Hint: If your gut says “Do not do this, it isn’t safe” then listen to your gut, or it probably isn’t going to turn out well. I knew in my soul that the injection wasn’t going to be a good thing for me, and I don’t even have a minor fear of needles.)
I haven’t been back to the ER since, I have to admit I have stayed at home through even worse pain than that episode since then. No part of my soul trusts the Emergency Room to treat me, as a 26 year old fibromyalgia and chronic fatigue syndrome patient with occipital and trigeminal neuralgia, Spina Bifida Occulta, Joint Hypermobility Syndrome / Ehlers-Danlos Syndrome, with damaged vertebral discs at the top and bottom of my spine and everywhere in between, just to name a few of my chronic pain conditions. None of that matters because what they see is a 26 year old who usually hasn’t showered in days, is twitchy and fidgety (pain makes me move nonstop sometimes), sweating profusely (a fibro symptom having to do with autonomic nervous system dysfunction or dysautonomia), has a hard time walking in a straight line, and usually I am extremely angry or panicky, one or the other. There isn’t a lot of sympathy for me if I don’t do absolutely everything right when I go to the ER.
Please help spread the word about malfunction of the autonomic nervous system and the many chronic conditions it can cause. There is no cure for dysautonomia, it is an invisible illness, and from day to day and person to person the symptoms vary widely as does the severity, so life with any of these illnesses is a roller-coaster, to say the least. Some people are just dizzy all the time and may not even realize that it isn’t normal, and severely affected individuals faint every time they stand or even sit up for a period of time, sometimes just a few seconds.
No one bothered to teach me about the autonomic nervous system. In a perfect world, doctors would explain these things to patients who are experiencing classic symptoms of ANS malfunction, as I am, and they would explain just how involved the ANS is in so many processes throughout the body. Normally, when you are in pain or experiencing stress, your autonomic nervous system ramps up your blood pressure, makes you sweat, and elevates your heart rate. When the pain or stressor is gone, your ANS should quiet right back down again, returning to baseline (and you with it). Yet, the ANS can become part of a long-term issue like chronic pain as well. It can become so agitated that it is constantly hyperactive; constantly on. This can exhaust your body and cause a cascade of other symptoms, some of which may be unexpected such as chronic fatigue, gastroparesis, severe migraines, adrenal fatigue, increased chronic pain, and immune issues.
First, it’s important to understand just how much the autonomic nervous system matters. It is involved in most involuntary actions in the body, such as heart rate, blood pressure, digestion, kidney function, and temperature control. Imagine never being the right temperature; always being too hot or too cold. When I say “too cold” I don’t mean in a mildly uncomfortable way, the way it feels to be out in the cold too long for a regular person, instead it can actually be quite painful and feel like it’s coming from the inside out, stinging and zapping your skin anywhere it touches articles of clothing or a draft hits it. Standing up with dysautonomia is like climbing Mt. Everest on bad days, and the constant headaches and digestive issues get old, fast.
Here is a pretty good overview of what Dysautonomia is, who gets it, what treatments are available, and other useful tidbits of info about ANS malfunction, so you can help spread awareness this month;
Image by Rachael Rodriguez.