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Managing Rare Conditions in the ER

This post was inspired by the pitfalls of modern life—I misread an article because I speed-read it. I thought it would make a great blog topic, but when I went back to get information from it at a proper scholarly pace, I realized I had it all wrong. Then I thought, “But what if I’d had it right? I bet that’s a real concern for my audience.”

The deal is, a woman at St. Charles Hospital in Bend died in the ER because her adrenal crisis was misdiagnosed https://ktvz.com/news/2019/12/30/st-charles-bend-hit-with-26-5-million-wrongful-death-suit/. Which is a terrible thing, made even worse by the fact that her life could have been saved with a dose of an inexpensive corticosteroid.

Now, when I first saw the article, I thought the woman knew what was happening and had been unable to convince the ER doctor of it. When I realized my mistake, I remembered the research I did on dysautonomia, and how many people had doctors who didn’t believe them.

What if you were traveling, or even at home, and you had to be treated in an emergency room, and the doctors there didn’t know anything about your rare condition and were skeptical of what you told them? Maybe they even tried to contradict you and acted on an alternate diagnosis that was wrong? What if you couldn’t stop them? Like my friend Heather Thompson said, by the time you’re in the ER, many people are in no condition to self-advocate.

This is a very real danger. I did some research and found a constant theme in every story: people with rare conditions delay getting the care they need, or avoid the ER altogether, because they’re so afraid of this happening. They’re afraid for a reason; it happens all the time, because doctors will default to what they know. You know how, on medical shows, they’re always saying, “When you hear hoofbeats, look for horses, not zebras.” What if the zebra identifies itself clearly and the doctor still insists it’s a horse because they’ve never seen a zebra before and didn’t know they exist?

If you have a rare condition of any kind, you need to be prepared for this. The professional planner in me wants to make a list or prepare a tool kit. So what can you do to prevent what could be at worst a lethal situation, at best a frustrating barrier to the care you need?

For the long game, make sure you have a primary provider who does understand, who works with you for proper diagnosis and management, and who you trust to advocate in your best interest. That’s your starting point—one person an unfamiliar doctor can call to get the real story, who they will listen to. That may not help you at 3:00 AM, but it’s still step one. (It takes many people years to find that provider; start now!)

Next, make sure your information is as accessible as possible. Many companies offer an online medical file access service. Mine is a Road ID—their jewelry is comfortable, their service reliable, and they’re super affordable. Competitors abound, find one with the right price and style for you. My soft silicone band has the medical alert symbol on it (I don’t say MedicAlert because that is a registered trademark, and one of the best known companies providing this service). The tag directs first responders to a web site, and my file number is stamped on the back of my tag in such a way that it can be read without removing it from the bracelet, but still can’t be seen without turning it over, so a stranger couldn’t cyberstalk you with it. I had mine made with two tags, one with the online file link and one with stuff they need to know before logging in, or if there’s no signal, like critical medication allergies and the phone numbers of my emergency contacts.

I have a little fun with my bracelet; I change the band color for each of the Solstices, Equinoxes, and lunar festivals on the ancient Pagan calendar. Right now it’s red, for Yuletide, and it will change to white for the lunar new year. I mean, if you’re going to wear a medical ID, why not make it fun? I used to love wearing bracelets, and now I have the medical ID on my left wrist (so no watch, which I also loved to wear), and my right wrist is so scarred from amputation and reattachment that I can’t bear to have anything touch it, even my sleeve. My ID must provide some joy; I demand that of it.

Keep your online file up to date, and make sure your provider’s information on it is current. I just remembered my clinic moved last year and I haven’t checked to make sure the phone number didn’t change.

Make sure your complete medical file is accessible to the hospital in your town. If your doctor is not affiliated with the hospital, have them send your updated files over to the hospital so they’re there if you need care.

As your last line of defense, practice explaining yourself to a friend who role-plays as an ER doctor. Your friend should be capable of obstreperous interruption and devil’s-advocate contradiction. That’s not a slam on all ER doctors, only the worst one you’re likely to get. Make sure you can get them up to speed in credible terminology so they’ll listen. For example you might say, “I’m traveling from San Diego, where I’m under care for Cyclic Vomiting Syndrome. I’ve been successfully treated with Zofran, (give correct dosage) and IV fluids. I’m requesting that treatment now.” Then you furnish your own doctor’s card. This is the approach you use if you’re lucky enough to be able to communicate confidently. Have your friend give you the business, every contradictory thing they could possibly say, and rehearse your responses so they come automatically to you even when you’re compromised.

I read that people with Cyclic Vomiting Syndrome (a dysautonomic condition) are often told that their condition is caused by cannabis products. In almost every case, the patient had the condition prior to trying cannabis, and uses cannabis to relieve it. Yet doctors get in their faces about it and in some cases, refuse to treat them if they admit to using cannabis. This is a good example of a case where having a doctor who will advocate for you is critically important.

Being prepared isn’t just for Boy Scouts. Even if you think this doesn’t apply to you because you never travel, you could be called to a family emergency and have your own crisis while there. I was lucky; when I had a PTSD episode at my dad’s death bed, I had my doctor’s contact information and was able to get the medication I needed right there in the hospital pharmacy without having to furnish a lengthy explanation.

Have you had a bad ER experience? Tell us about that. What happened, and what did you do? Have you had a great one? Tell about that too.

Managing Rare Conditions in the ER


Kristin Noreen

Kristin Noreen lives in Bellingham, Washington with two cats and her vintage touring bicycle, Silver. Her triple passions are animal rescue, long-distance bike touring, and writing. Her book, On Silver Wings: A Life Reconstructed, is about reinventing her life following a catastrophic injury.


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APA Reference
, . (2020). Managing Rare Conditions in the ER. Psych Central. Retrieved on May 27, 2020, from https://blogs.psychcentral.com/hidden-disabilities/2020/01/managing-rare-conditions-in-the-er/

 

Last updated: 10 Jan 2020
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