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An Open Letter to ER Staff, From a Person With Chronic Pain

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We need to have a talk — about the difference between the way the “normal “ people handle pain and the way people with chronic illness handle pain. It seems it would be obvious, and yet people with chronic illnesses dread going to the ER. Some, like myself, don’t even bother to go no matter how bad the pain is, because we have been treated like drug seekers and dismissed one too many times. There are a couple of problems with this:

First — no one should be in pain and on top of that have their pain invalidated and be humiliated.

Second — what happens if one day the pain isn’t from one of my chronic illnesses and I think it is? What if it’s something very serious but because of how I’ve been treated in the past, I don’t go to the ER and I end up paying with my life? I can promise you that it isn’t just me that might have an ending like that.

When you have a chronic illness, or multiple as in my  case and that of many others, you live in pain every second of every minute of everyday. Our baseline on that God-forsaken pain scale is not a 0. For us there really is no pain scale; there is “I’m handling it” and “I can’t handle it anymore.” Being in neverending pain, especially when it spikes during a flare, can drive us into an endless thought loop of  “don’t know what to do, I can’t handle this, I don’t know what to do, I can’t handle this.” Very much like your patient down the hall that is moaning and screaming. I’m not talking about the ones showboating for attention. I’m talking about the patients with very valid pain that are screaming out because they don’t know what else to do. Those patients that you take very seriously because you can quite clearly see their pain.

We are at the same level. The difference is that you won’t see us screaming out, probably not even writhing on the stretcher. You may see some rocking back and forth, some white knuckling of the stretcher bars, deep breathing, a moan hear and there, a pinched face, tightening of the jaw muscles…you may even see something that makes no sense to you at all. When I’m in pain I try to talk and joke with the nurses, anything to take my mind off of my pain. But when you look at our chart and see a 7 on our pain scale and look at us, it doesn’t add up in your mind. It is because you don’t understand, and that makes me disappointed in you for not trying to educate yourself to understand our population a bit better. After all, we are a part of your job.

Being in pain 24/7 we can’t scream the whole time. We have learned to be in pain. We have learned to get through each episode with as little reaction as possible because the more energy we use, the longer our flare will last. And if we aren’t flaring, then the better the chance that we will have a flare. We have taught ourselves how to handle pain, and we are being punished for it because we aren’t screaming in our ER room. Because we are using techniques that we have taught ourselves, doctors assume we are faking and just want pain killers to get high or that “it is in our head.” This has even happened to me when I’ve had all of my medical records with me citing my 18 different medical conditions.

Doctors, physicians assistants, you are extremely intelligent beings which is why I am at such a loss for why you have such a hard time getting a handle on this. Please, do us a favor, do yourselves a favor, start learning more about chronically ill patients. Trust us, we would much rather go to our general practitioner or specialist as they know us better, but there are times that they aren’t going to be available and we need you.

Could you imagine having the pain of a massive kidney stone, but not going to the hospital because you know they won’t help you..and it’s past office hours for all of your other doctors on a Friday night of a holiday weekend? Can you feel the helplessness? That’s how chronic pain patients feel when the pain gets bad, but they’ve been dismissed so many times that they know they won’t get help at the ER. They feel scared, helpless, hopeless and angry.

Please just try to understand that you are going to get massively different reactions from someone who is not used to being in pain, and someone who is always in pain, neither of those reactions are wrong and neither of those patients are lying.

Photo credit: jgaunion/Getty Images

Originally published: May 24, 2019
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