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27 Things You'll Only Understand If You've Been to the ER With a Chronic Illness

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Most people have a picture in their heads of what it’s like being in the emergency room, either from their own experience with an acute illness or broken bone, or from portrayals of hectic ERs on TV, filled with doctors rushing around trying to save lives. But what many people who have limited experience with ERs may not know is that people with chronic health conditions often experience the ER in unique ways. Chronic health conditions are often difficult to treat and less-understood than the emergencies more frequently seen in the ER, adding a layer of challenges and uncertainty to a chronically ill person’s ER visit.

The only people who really “get” what it’s like being in the ER with a chronic illness are other chronically ill people, so we wanted to find out what kinds of problems everyone in the community has experienced and can relate to. So we asked our Mighty readers to share some things that have happened to them in the ER (both serious and funny!) that you’ll only understand if you also have a chronic illness. Two things are clear: First, that ER staff need better training in treating chronic illness, and second, that people with chronic illness are truly incredible for managing their own healthcare with such knowledge and skill.

  1. “When you warn every nurse and doctor that comes through that door that they’re going to have a tough time finding a vein for an IV, and they all scoff and assume you’re joking… until a good five missed stabs later, and they realize maybe they should have listened!” — Bonnie P.
  2. “That you don’t appear in as much pain as you actually are in because you spend your life masking the pain you live with every day.” — Liz M.
  3. “Having everything typed up and just handing it to the doctors/nurses when they say ‘any medical conditions or allergies.’ How long we got to talk about this?” — Chelsie P.
  4. “When you almost die because you are scared to go to the ER in case it’s not serious. You go septic and it’s scary. I have a bottle of pain medicine. Sometimes it’s not medicine seeking! Sometimes it’s an infection.” — Amber O.
  5. “Having Crohn’s disease and being put in a room far away from the bathroom means lots of people have seen my backside while I’m rushing to the bathroom in a hospital gown.” — Tyler S.
  6. “You can leave the ER sicker than when you came in by catching a cold or [gastrointestinal illness] or something worse. Normal people can’t understand the risk we take by going to the ER in the first place. So just know if I am here something is really wrong as I would not risk it otherwise.” — Aimee A.
  7. “Being too tired to wait any longer in the ER and being ready to go home before they have found the problem for what brought you in. I have several now-diagnosed rare diseases but it was so hard to stay awake or to get any sleep in the noisy ER.” — Lisa S.
  8. “Having a feeding tube and having to go to the ER constantly for tube problems whether it falls out, an infection, pain, etc. If you have or have had feeding tubes you know the struggle, LOL. Having to go to the ER for feeding tube related issues is a pain.” — Abby B.
  9. “Knowing the ED staff by their first names, being able to ask how their kids are doing and knowing when they aren’t on their regular shift.” — Jess D.
  10. “I refuse to go until it’s extremely serious. My doctors/nurses will be on the phone telling me I need to go and I tell them I’ll just give it a few more hours/days/weeks. Next thing I know I’m in the ER a mess.” — Sarah B.
  11. “You can’t go to the ER without expecting them to keep you for a week. Always! Annoying, that’s why I preferred not to go unless I know I’m dying, otherwise for sure it’s ‘OK Ms. P. you will be admitted today, they are preparing your room.’ And there goes my week (or two)!” — Gi P.
  12. “I have IBS-A from Ehlers-Danlos syndrome. I was terribly impacted and had to go to the ER. My nurse was very handsome and I was already embarrassed as it was so all I could do (in my classic style) was crack jokes like, ‘I’m sorry you had to see this side of me… We’ve been through a lot of s**t together today.’ He did say I was one of his favorites because I was so funny. I always tend to crack jokes when I’m in a scary or not-so-fun situation. It’s a coping mechanism.” — Rachel F.
  13. “It’s such a vulnerable feeling knowing that the ER can’t really help me and that I know way more than they do about my complicated and rare conditions. Normal people can’t relate to it at all. If you’re scared and sick, you go to the hospital, and they fix you. But for so many of us that is absolutely not the way it goes and it’s a super scary feeling knowing we don’t have that safety net.” — Erin M.
  14. “Every time I tell any doctor at all about my rare blood clot I get to play 50 questions because it is so rare. Then I get to hear for the rest of my time there how rare it is… Also, my surgeon told me I shouldn’t put it on my medical ID bracelet because I would bleed to death while first responders tried to figure out what it was. I was in a car wreck a month ago and neither the firemen nor EMTs had heard of it. The EMT Googled it in the ambulance and then we played 50 questions. I don’t mind it, I just find it funny.” — Melanie S.
  15. “Being asked if I’m pregnant even though I stated no in the beginning and then being asked again even though labs say no. It’s like I have to write ‘virgin’ on my forehead.” — Lyssa A.
  16. “The standard treatments are sometimes not used due to the disability. E.g. after a car accident the focus is all on the back and skips over the head injury, all because the answer to the question does your back hurt, is yes it always does and can you stand, no you need a wheelchair. Back scan done, no scan for the head. Never mind the fact the head was smacked and you blacked out.” — Kelly R.
  17. “It’s like ‘Cheers’ whenever I arrive, everybody knows my name.” — Dana T.
  18. “When I finally got an IV of pain relief for my twisted intestine, I started to cry. The doctor thought something was wrong and asked, but I said I’m only crying because I just realized this is the first time in 10 years that I haven’t been in pain.” — Jenny K.
  19. “Walking through the halls like a celebrity because everyone knows you. Always having the same room to the point that you can count patterns on the wall. Watching a particular nurse’s pregnancy…” — Bailey S.
  20. “Having to keep a tiny container in my purse just in case they need me to take out my piercings for scans.” — Erica R.
  21. “Having to bring a literal bag of my medications since I have so many. It takes forever to explain what they all are for and how much I take and when, etc.” — Beth H.
  22. “Being told that ‘you must be mistaken’ when explaining your condition. Only to have the nurse/doctor/whoever come back in with a slight look of shame because they are the ones that didn’t understand.” — Katie R.
  23. “You play guessing games to keep you occupied, but guessing games about your health. What health care professional will you see first? What tests will they run? What will the tests show? Will this doctor remember me? They sound like simple things but we make them as humorous and fun as possible since it’s so routine yet sometimes unpredictable.” — Hannah E.
  24. “Having to explain and correctly pronounce my disease for doctors that have no clue, literally every single doctor I’ve seen other than my rheumatologist.” — Angie M.
  25. “Doctor/nurse: ‘Oh wow your heart rate is really high.’ Me: ‘Oh it’s only *number*, that’s pretty normal for me.’ Them: *surprised face*.” — Caitlin P.
  26. “I know my body. If I’ve come to the ER, chances are I know what is going on, what medicine to give me and I just want to be out as fast as possible. Please understand I live with my illnesses every day, I know how to treat them, I just need your help.” — Raven N.
  27. “Responding ‘everywhere’ when they ask where the pain is located.” — Heather M.

Check out our Mighty community’s advice for making a hospital visit go smoothly:

To ER or Not to ER: That Is the Question When You Live With Chronic Illness

6 Essential Items I Pack in My Hospital Bag

10 Ways to Empower Yourself While in the Hospital

Originally published: September 24, 2018
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