An Open Letter to ER Professionals
Guest post by Danielle Faith
Dear ER Professional,
I have chronic pain due to a rare illness. I know you’re busy seeing patients and saving lives. I will patiently wait for hours until you have the time to see me. I’m courteous to you staff and treat you with respect at all times. I hope you can treat me with the same respect I show your staff.
If I’m in your ER room, chances are I’m not dying and I’m not in a good place. It means my illness has flared so much that it is no longer tolerable at home. I’m usually here because I know my illness very well, and an admission to the hospital is likely necessary. Yet, I get prematurely discharged with lack of treatment only to end up back in your ER a day or two later because the symptoms have progressed and will not stop.
I hate being judged when I do this. So, I’m writing this open letter, to all ER doctors, so you can see what it is really like for someone with a chronic illness to visit the ER. Here are a few things the ER doesn’t see when it comes my personal case and many of those who also suffer from chronic illness, rare diseases and chronic pain.
- The ER doesn’t know I stay home during most of my flares. If I’m in your ER room it means I’m hurting badly and am symptomatic. It means that I’ve taken my daily allotted medications and not much has changed. It means I need aggressive intervention. Due to fears of being treated poorly I tend to stay away from the ER. I won’t go, I’m simply too scared my illness won’t be treated properly. So for each time I visit the ER there are 4 other times I did not visit the ER and just dealt with it.
- The ER doesn’t always understand the big picture. When I visit the ER my interaction with the doctor is so quick. It’s hard to get everything in. I recommend carrying a cheat sheet that is only 1 page long and outlines why you’re there and what you need out of your visit. The problem is doctor’s think chronic illness should be managed at home, but sometimes we flare up and require more advanced intervention.
- The ER is far too judgmental. Sometimes in the ER, I’ll get accused of causing my problem because I ate something I wasn’t supposed to or overdid it and caused myself to get sick. This drives me bonkers because, on top of not visiting the ER the majority of the times when I start vomiting, I never try to make myself sick. It’s just sometimes it’s nice to have pizza, even though I may pay for it later, or sometimes it is nice to go out with friends, even though I may pay for it later. For me, it’s about the quality of life, and sometimes it, unfortunately, comes at the expense of my health. So, nothing makes me more upset than an ER professional telling me that I shouldn’t have had that pizza. I know that, but try living a day in my shoes, you’ll want a slice of pizza – I can guarantee it.
- The ER doesn’t see how Stressed I am: Deciding to come into the ER is a big decision for me. It is a choice I do not take lightly and I’m usually quite stressed out due to bad past experiences. This means that my anxiety sometimes gets the better of me. I’ll forget to include certain pieces of information or I might freeze up when asked a question. Or my blood pressure might be very high. All I ask is that the ER professionals be courteous, and try not to pressure me into a situation I am not comfortable with.
- The ER doesn’t know I’ll do just about anything to get out of pain. If it treats pain, I’ll try it. Nerve blocks, thoracic epidurals, and feeding tubes are just a few things I’ve tried to use to treat my pain. I always leave it up to the ER doctor’s discretion on what to do in terms of managing my pain. Believe it or not, pain management in the ER is secondary to me. My first concern is that my condition needs to be stabilized. It is sad how much true pain suffers get accused of drug seeking. It isn’t right and should not be happening.
Being sick with a chronic illness that causes multiple vomiting episodes a month is hard. It’s even more difficult to get an ER professional to accept this when I tell them what is going on and try to convey why I gave up and went to the ER after 48+ hours of vomiting instead of waiting it out. Usually, it’s because I’m in too much pain to see straight or focus.
It is frustrating and I wish it was different. All I can do is hope that my next visit to the ER will be far enough apart from my last visit that I will be taken seriously.
Unfortunately, that is my reality. Please try to understand. It is not easy. In fact, it is very difficult and has affected me negatively in so many different ways. If I could change my reality, I would, but this is what it is. All I ask is that the next time you see someone with chronic pain and chronic illness show up in your emergency room, please treat them with kindness, they are simply seeking help during a venerable time. Chances are they would not be in your ER if they did not truly require a visit. It is important that emergency room professionals recognize this.
A Chronic Pain Warrior
Author Bio: Danielle Faith is a graduate of the University of California, Los Angeles and is a chronic pain patient. Her friends would describe her as optimistic, persistent, and resilient. Danielle runs her website dedicated to helping others with chronic pain. XoFaith.com