22 Things People With Invisible Illness Wish ER Staff Knew

It’s safe to say the emergency room is not a place anyone with an invisible illness wants to visit. Because their symptoms may not be visible or easily diagnosable to ER staff, a trip to the ER can mean a long wait, doctors and nurses who don’t know the best course of treatment, or having to field suspicions of those who think you’re making up your symptoms. It’s usually a frustrating place of last resort.

To help ER staff better understand how to treat patients, we asked our Facebook community with invisible illness to share what they wish ER employees knew about them. Just because the cause of your symptoms may not be visible doesn’t mean you should be doubted or treated with less respect, and we hope this helps ER staff rethink how they approach their patients.

Here’s what our community told us:

1. “The pain scale is not universal! My 7 on the pain scale can be much different from someone else’s 7… but might be the same as someone’s 10! So don’t invalidate my pain.”

2. “I’m not here to seek drugs, I’m here for a real illness and I need real care. I’m not able to help myself now, that’s why I’ve come to see a doctor. If this was something I could treat, I sure as heck wouldn’t be here.”

3. “We know a lot more about our illness/disease than you probably do. That is not to be rude. Some have dealt with it most of our lives and had to learn and study it… So when we tell you something or explain something, take us seriously! This is your first or maybe second time/day looking at us/this illness/disease. So please humble yourself and use us and our knowledge as a strength to help us. Please do not be frustrated that we know things and get angry and then defensive.”

4. “I don’t even want to be here. I debate for days and I’m here because I was told to go by a doctor.”

5. “I’m type 1 diabetic and something that so many of my doctors call me when my blood sugars haven’t been great is ‘non-compliant,’ which I think is entirely unfair. It suggests I’m unwell just to be rebellious or something, like I’m not trying hard enough to manage my condition – I wish they knew I am trying, really bloody hard.”

6. “It is OK to say you don’t know or to learn from your patient. It is not helpful to pretend you know more than you do. Have open ears and an open mind… Understand that we only want help. If you don’t know what to do, it’s OK to try to find someone who does.”

7. “Don’t talk to me like a child or dog. Just because I’m asking for help with my pain doesn’t give you the right to second-guess me or decide I’m not a ‘real’ emergency.”

8. “Just because the blood work and scans say everything is normal doesn’t mean there is nothing wrong. Dig a little deeper, my medical friends.”

9. “This could be them. At any point in time, their life could become what mine has been for so many years. If it did, they would want to feel understood, respected and helped. I would never wish it on anyone, but if they could experience my pain and illness and fatigue for just a short time and know it’s my norm… maybe then they could see how hard this is.”

10. “I wish they were more educated about autoimmune diseases. I’ve had to go to the ER twice due to complications from my rheumatoid arthritis. They hear ‘RA’ and just think ‘joints.’ I was lucky to eventually get someone both times who understood that RA affects our organs, but it took a lot of time and frustration.”

11. “When you hear hoofbeats, remember that zebras do exist. We’re rare, but we’re here.”

12. “I’ve probably waited a few days and have tried everything else or feel as if my life is actually on the line if I’m coming to emergency. Please take me seriously.”

13. “It’s not always our original disorder. I have fibromyalgia and I went to the ER because of an extremely bad headache and stroke symptoms. They didn’t even check for stroke. I went to another ER and it turned out to be a stroke. It’s not all in our heads!”

14. “Don’t just put me in a room and forget me for hours before anyone even sees me!”

15. “If I go in for a physical injury or my physical illness I wish they wouldn’t always judge me when they see on my chart I have a mental illness… they think just because you have a mental illness there is no way you can have a physical illness also (that’s how it seems)… because it just has to be all in my head because of my mental illness.”

16. “My pain is real, and it is not just in my head. I’m not searching for drugs. I’m not trying to waste your time. I know you cannot cure it. I just want a little bit of relief. A few hours where my pain doesn’t make me want to scream. I should be treated with as much respect as the others who come in there.”

17. “I wish they knew what my disease is in general. I’m sick of getting blank stares when I tell them my condition and what’s wrong with me. My condition is becoming more and more prevalent, and it’s important that they understand what the disease is, even if it’s not necessarily a common one.”

18. “I don’t want to be there in the first place, and a kind nurse or doctor can make my stay that much easier. Whether you believe my illness and pain is legit, please at least be nice about it.”

19. “You may have gone to medical school for seven years, but I have had an education with my body for 40+ years. Do not take my lack of formal education as ignorance. Please listen before you diagnose.”

20. “I am in charge of my final medical decisions as much as is possible. I will listen to your opinion, but I may choose to do something differently. I know my body best.”

21. “You shouldn’t assume that because I’m young that I can’t have the health problems that I do. Age knows no boundaries when it comes to invisible illness.”

22. “Even though I don’t look like I’m in pain, I am. I live with pain every day and have just gotten really good at hiding it. If I say I’m in severe pain, please believe me.”