Wednesday, December 14, 2016
Personal stories humanize the challenges we face as a society, and stories from people living with chronic pain are no exception. I have heard many accounts of what it is like—I have my own. But, do we truly understand, patient and provider, how labels like “opioid use disorder” contribute to our current pain care conundrum?
I want to personally thank Patti Allen-Young on behalf of over 100 million American’s living with chronic pain for sharing her story.
My Life With Chronic Pain After Being Misdiagnosed With Addiction
by Patti Young
I am a patient who lives with chronic pain from a lower back injury that resulted in two surgeries. My condition has led to a label many of us endure—chronic pain.
I understand it can be difficult for a healthcare provider to manage a patient with both chronic pain and a substance use disorder. But does that give them the right to mislabel or use terms they don’t understand, labels that compromise care?
I need to share my story.
Experiencing sudden severe eye pain and knowing the protocol as a nurse, I called ahead to emergency room (ER) to make sure an eye doctor was available. I never saw that doctor. Instead, I was seen by a physicians’ assistant (PA) who prescribed an antibiotic eye drop. My severe pain complaints were not only ignored the PA’s interaction changed after reviewing my medical record. Later I would recognize the uneasy feeling that something detrimental to me was about to unfold. I could have gone blind because of bias in the healthcare environment.
My next encounter with discrimination was when I sought help for severe groin and hip pain, eventually diagnosed as sacroiliac (SI) joint dysfunction from my initial lumbar fusion. I was laying on the ER gurney, my husband at my side. Once again, my extreme pain complaints were dismissed. But this time something bizarre happened. Three security guards descended on me and told me to get in my wheel chair and leave or they would pick me up, put me in it, and escort me out. I was a 59 year old, disabled woman and no threat to anyone. They must have the wrong person, I thought. My husband sat stunned beyond words. Now, I knew there was something in my medical record I needed to see.
How could this happen?
Because my care was being compromised, the investigation into that “red flag” began. What I found was that a new doctor I saw on referral mistakenly documented “history of addiction” in my medical record. I asked myself, “Did I have a dependency problem that no one was sharing with me?” I found no mention of any dependency problems in my records by my other healthcare providers. In fact, at the time I was still being prescribed pain medication. Why wouldn’t a doctor making such a judgment discuss this with me? Did he decide—not knowing me at all—I was misusing my pain medicines? Was it human error?
I understand that people do suffer with addiction, and I would hope those folks get appropriate care. But, a misdiagnosis, a misguided judgment, or a medical record error can affect a patient forever.
Soon after moving to a new state to escape harsh winter weather that aggravated my pain, I had to seek emergency care. You see, despite knowing primary care physicians were accepting new patients and my insurance, I had great difficulty finding one. That red flag, the label, continued to haunt me.
Physical Harm – Is that all there is?
I experienced physical ramifications from labeling, but it also caused me mental and emotional distress and problems relating to others. Even though I realize the label was unfounded, the sleight of hand unleashed more obstacles for me to overcome.
Ignored and mistreated in my times of real need, the hospital staff responsible for their role in having me removed from that emergency room demonstrated their anger by tone of voice, gestures, and curtness. I felt hopeless. It was a very dark time in my life that has become difficult to forget.
Stories like mine shouldn’t happen in a civilized world. As a nurse, I ask, “What is the treatment plan and bias for those who do live addiction or with chronic pain and addiction”? Do they “deserve” to be treated badly, judged, and denied access to the care they need? Isn’t there a problem when people living with chronic pain develop PTSD and anxiety because of their medical treatment? Is it any wonder I distrust the very physicians I have to go to for help?
I am a person, not a label
Once a trusted fellow healthcare provider, a nurse for nearly 35 years, I no longer feel the camaraderie I once enjoyed. My reputation is important to my character; I am not a different person simply because I live with chronic pain, yet I have been mislabeled and treated harshly.
Educate – Do no harm
The medical community needs to be educated. I certainly have been. That’s why I wanted to share my story. There is a difference between physical dependence and addiction. Addiction, misuse, or opioid use disorder are not synonymous with needing an opioid to treat very real, documented pain conditions. A distinction and differentiation should be made by someone qualified.
Many medical professionals congratulated me for stopping my pain medication when I found other affective treatments. I thought they were crazy. For me, it was no mental feat, because I was not addicted, though the physical withdrawal was no party. I don’t have skin in this game now, but I still live with chronic pain and I can say without hesitation, it’s time to stop hurting and stigmatizing pain patients. It only makes their pain experience worse, their medical care neglectful, and can lead to serious mental health problems or even suicide.
Healthcare providers, make sure your diagnosis has merit. Refer your patients to someone qualified to document “their expert findings”. Have an honest conversation with your patient. Stop for a second and think about how documenting personal opinions can affect someone else’s life, health, and well-being. Join patients like me willing to share their story by becoming part of the solution. Don’t ignore your patient’s pain complaints, advocate for them.
Sincerely, Patti Young
“To create change, we must squarely face the reality of pain in our society, including both the helpful treatments and services that are currently available for people in pain and the ways that we, as a society, are falling short of giving people the help for their pain that they need."
Lynn Webster, MD, The Painful Truth
The patients I hear from are looking for hope. They feel mistreated, talked down to, and ridiculed; they are bullied into submission and sometimes torture. Perhaps we need better education for providers and patients on the difference between pain and addiction behaviors. Perhaps we can hold others accountable by sharing our stories. Most patients find being a change agent is empowering. So please, help us carry their stories to social platforms. We can make a difference for all those living with chronic pain.
If you feel you are being harmed, please review the ”Guidelines for Pain Warriors” and other helpful information at http://CelesteCooper.com .
"Adversity is only an obstacle if we fail to see opportunity."
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Celeste Cooper, RN
Celeste’s Website: http://CelesteCooper.com
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All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.