Most of my life I’ve been in and out of emergency rooms. Migraines, broken bones, and infections have landed me there more times than I’d like to admit. Not to mention that my former job was to take people by ambulance to the same hospital that I now frequent.
Unfortunately, something changed when I was diagnosed with Complex Regional Pain Syndrome (CRPS). I went from being the girl that everyone recognized from working at the ambulance company, to being perceived as a drug addict with a made up pain condition.
No one at the emergency room of my hospital has ever heard of CRPS. They don’t recognize the agonizing pain that plagues my life. Doctors are baffled by me, and usually decide that I’m lying and trying to score pain medications. They don’t understand how I can smile and joke around and still be in the amount of pain I claim to be. They don’t see how much work it takes to keep a smile on my face.
Ignorance and lack of compassion plague many doctors nowadays.
People with chronic pain are considered outcasts of society. They’re looked down on, and judged by people who have no idea what it’s like to live with chronic pain. All the public has ever heard about are the amounts of painkillers pain patients are on, leading them to believe that the person is an addict. Unfortunately, these misconceptions and stigmas can prevent patients from receiving humane treatment.
Since my diagnosis, I’ve been a patient at the emergency room at least 15 times. That’s almost once a month, with my latest trip being three days ago. During my time there, I have been called a liar, suspected of being a “pill seeker” and been refused treatment.
I am believed to be a drug addict because my pain is so high; it takes a large dose of medication to take just the edge off. Many doctors and nurses don’t understand that I’ve been taking narcotics for over two years and have developed a tolerance. Right now, I take 30 mg of morphine daily, which is just barely enough that I can make it to and from the bathroom 10 feet from my bed. Occasionally, it will even allow me to sleep for more than an hour or two at night and not be doubled over in pain.
Doctors get agitated because the only thing they can do to help me is give me more pain medications. They don’t know what else to do. That is the only thing they have in their repertoire to deal with pain, which is to treat the symptoms.
This does not work with CRPS. It is a Band-Aid over a giant knife wound. It may hide part of it, but in no way is the Band-Aid a fix. Even outside of emergency medicine, few doctors even know where to begin to address the causes of chronic pain, instead of only treating its effects.
Finally, after 18 months, I have taken my treatment into my own hands.
Now, I never go to the emergency room empty handed. I always bring a piece of paper for every step of the process. I bring personal and insurance information for admitting, and a medical history and baseline for triage. There is also a list of medications and a description of CRPS for my nurse.
What I bring for my doctor is slightly different. I not only bring a breakdown and information pamphlet about my condition, but also the hospital’s protocol and guidelines for treating CRPS. Once I present the doctor with this information, the quality of care improves dramatically. I’m treated as a human again. They’re gentle and conscientious of where my IV’s are placed, and the temperature of the blankets. They don’t purposely bump my legs just to see how I will react anymore. Most importantly though, they don’t sit and tell my husband and mother that I’m faking my pain or coming down from a high.
What they have told my family is unfathomable. I’m not, nor have I ever been a drug addict. Yet, here are doctors telling my family that I’m having seizures because I’m coming down from my addiction to pain medication. It’s not right. Quality of care needs to change.
You would think, by how I’m treated, that no one has ever had CRPS. That’s simply not the case. I’ve heard estimates of between 1.5 and 6 million cases of CRPS in the U.S. alone, with 50,000 new cases a year.
Chronic pain patients deserve respect. It’s apparent that we cannot count on the doctor’s to know and understand what’s happening with us in regards to our conditions. Our responsibility is to ensure that we receive the best care possible.
Sometimes that might involve stepping on toes, but it will be worth it in the end. It might make the following trips easier on yourself or someone else.
Amanda Siebe lives in Portland, Oregon with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.