By Emily Ullrich, Columnist
Recently the news has been covering the story of Barbara Dawson, a Florida woman who was arrested after she refused to leave a hospital that would not treat her for abdominal pain. While being escorted from the hospital in handcuffs, she collapsed in the parking lot and later died.
For many of us who are chronic pain patients, this kind of treatment is all too familiar. More often than not, when doctors see that we are on pain medications, they automatically assume that we are drug addicts and that we are “drug-seeking” just by going to the hospital.
Personally, I have so many of these experiences, that I couldn't possibly list them all. Last year, I was hospitalized for upper abdominal pain. I had been to the emergency room earlier that week for the same issue, so the doctor told me he was admitting me, “Because otherwise you'll just keep coming back.”
On my first day after being admitted, I was given no pain control and was taken off of my muscle relaxers. I got no sleep. I was told there was absolutely nothing wrong, and they couldn't find any reason to keep me. I overheard my nurse speaking to another nurse, saying that my liver enzymes were in the thousands.
I questioned the doctor, who was in the process of discharging me, about my liver enzymes. He asked how I knew about this. I claimed that I had asked the nurse, because I could tell he was angry and I didn't want to get her in trouble, although I had every right to know this potentially life threatening information. At that point, he felt pressured to keep me and try to figure out what was wrong.
Because they weren't treating my pain, my blood pressure was high and I was at risk of heart attack or stroke. Instead of treating my pain, they put me on two different blood pressure medications.
At one point, I was taken to another floor for an abdominal scan. I was in so much pain I was trembling. A nurse said, “So, you're an addict. When's the last time you used?”
I was dumbfounded. I replied that I was absolutely not an addict and asked why she said this.
“Oh, maybe I used the wrong terminology,” the nurse said. “You've been on pain meds for a long time, right?”
I said yes and she said, “Well, okay. You can't deny that, then. I just used the wrong word, sorry.”
I was suddenly acutely aware of the frequent misuse of the term “LTDU” (long term drug user), which is applied to many of us who take pain medications.
Upon transfer from my room to the exam room, I was given my medical records to hold. I opened and read them. Not surprisingly, I saw multiple remarks about “drug seeking behavior.” The nurse told me I was not allowed to read my own records. I said, “I'm allowed to hold them, but not read them? They're mine!”
“Yes. Well, it's hospital policy,” she replied.
I was hospitalized a second time last year, for the same issue, plus bradycardia. The admitting doctor was nasty to me, saying, “I am admitting you, but you will not be given one drop of pain medication other than Tylenol.”
Eventually, I was given a small dose of pain medication, but I was still trembling and vomiting the pain was so bad; yet the doctors refused to raise my dosage. I called the nurse, who got me a patient controlled pain pump. This was slightly more helpful, but when I let them know that the dosage was not controlling my pain, they took it away entirely. The gastrointestinal team came in and talked to me, but never came back.
I was discharged within three days, with no answers. Over those three days, I was told by one nurse, “If you call me every time it's time for your medication, you are called a ‘clock watcher,’ which we consider a form of drug-seeking.”
I was again gobsmacked. Later, another doctor came in and said, “We have no reason to believe you're in pain.”
I said, “Why would I go through all of this just to get a mediocre amount of pain medicine?! I'm not drug-seeking, I'm relief-seeking!”
The doctor said, “Well, there's not much difference.”
During this second stay, I had to call the charge nurse and often the patient advocate, just to get minimal pain control. Every time, I pointed out their sign, which said “If your pain is not relieved within 30 minutes, please tell your nurse. Our goal is to treat patients with respect and dignity.”
I pointed this out so many times that instead of heading their own policies, they literally changed the sign! They came in and screwed a new sign to the wall, which mentioned nothing about pain care or patient rights.
In August of 2014, before the two events described above, I had my gallbladder removed. I was already on pain medications for chronic pain and I expressed concern to the doctor that my pain after surgery would not be adequately controlled. He said, “Don't worry. You'll get your precious Percocet. One prescription, that's it!”
I was hurt and offended that he was treating me this way, as though I would have an organ removed just to get pain medicine! But, it got worse. As I was waking up from surgery, my eyes were not yet open, and I heard one nurse say to another, “The doctor said she's going to claim she's in pain, but just get her out of here.”
I opened my eyes and declared, “I heard you!” They both grew silent, and pretended that never happened.
This past August, on my 40th birthday, I landed in the ER again. Again, I had severe upper abdominal pain and was told that, “Nothing is wrong, and you will not be given narcotic medication.”
I asked the doctor to look at my liver enzymes. He saw that they were extremely elevated, and gave me a dose of pain medicine. The next thing I knew, the admitting doctor was in the room, telling me that I was “getting what I wanted” and I was going to be admitted. She introduced herself, and then proceeded to verbally steam roll me, telling me that I would not receive pain medications while I was in “her hospital.” She told me that I was already “unnecessarily on pain medicines.”
I questioned her, but she curtly cut me off. “I see that you have a bunch of 'garbage pail diagnoses,'” she said.
I was furious. I asked if she even knew what some of them where, and if she knew better than the doctors from “her” hospital who had made those diagnoses. She rolled her eyes, and continued with her speech on the lack of treatment I would receive while admitted.
I said, “So, I'm being admitted for pain control and further testing, but I won't receive pain control beyond the medications I currently take?”
“That is correct,” she said, her snide attitude seething. I told her that it was my 40th birthday and the last place I wanted to be was in the hospital, but I really wanted some answers. She just stared at me. I decided that I would take my chances, and go home. If this was any indication of the abusive treatment I was in for if I stayed, I wanted no part of it.
I was discharged with a diagnosis of intractable abdominal pain. Three weeks later, I looked at my online medical records, and noticed that my diagnosis had been changed to “narcotic withdrawal.”
Four years ago, I developed a severe kidney infection. I was deemed a drug-seeker by numerous ER's, without any testing for my symptoms. Eventually, a doctor took me seriously, but by then, I was developing sepsis, and my life was in danger. You can read the full story here.
Even during this horrible incident, I was taken off my regular pain medication and was given a tiny dose of IV pain medicine, equivalent to about half of my home medications. The nurses watched me writhe and cry in pain all day and night, until I spent two days in and out of consciousness. They argued with the doctor on my behalf and I argued with him, but nothing changed. I was still supposedly “drug seeking.”
I could go on and on, but I think by now you get the point. Our lives are in danger, on the off chance that doctors may accidentally give medicine to someone who is trying to get high. This is absolutely unacceptable.
Also, I'm not sure how much validity is behind their theory. It seems to me that if someone wanted to get high, buying drugs off the street would be much easier and cheaper. Like most of us who take pain medication to treat our pain, I do not feel any euphoria, just a little relief.
How is this kind of behavior in line with a doctor's Hippocratic oath to “First, do no harm?” It seems the oath is now “First, judge and abuse.”
Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.
Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of Pain Foundation, as she is able.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.