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?
The
Haunting
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
Editor’s
remarks:
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
.
In
healing,,Celeste
"Adversity is only an obstacle if we
fail to see opportunity."
~ • ~ • ~ • ~ • ~ • ~
Celeste
Cooper, RN
Learn more about Celeste’s books at her
website or find links here on Celeste's blog. Subscribe
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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.
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