By Emily Ullrich, Columnist
Over the six years I've dealt with chronic pain, doctors' attitudes toward me have changed. My attitude toward them has also changed, unfortunately, for the worse.
It changed because my experiences with doctors changed. Those of you who have been dealing with chronic illness for a significant time will likely know exactly what I mean. At first, we are a challenge. They want to see if they can figure out what the last doctor could not. They want to help us.
But, when they see that we are not getting better and that the only thing that they can do is manage our symptoms, their attitude changes. This is particularly true for those of us with multiple diagnoses.
I started with pelvic pain. I had a compassionate primary care doctor and, at the time, there was not such hysteria surrounding opioid pain medicine. He did his best to manage my pain and sent me to a pelvic pain specialist.
The pelvic pain specialist gave me hope. He let me know that it was not all in my head and that he felt we could make progress. He was honest and told me that we may not be able to eliminate the pain, but he was confident that we could get it down to a level with which I could live.
He tried many different treatments over the years and things only got worse. Finally, I suggested something. And it worked. He isn't happy to see me anymore.
As time progressed, I began to develop more symptoms and more potential diagnoses. I read about six books on fibromyalgia and knew that I had it. I brought this information to my primary care doctor, who laughed at me. He told me he “did not believe in fibro.” I argued that clearly it was something that affected enough people that it was worth considering.
Reluctantly, he referred me to a neurologist, who confirmed my suspicions. I later read in my primary care doctor's notes that “she is convinced she has 'fibromyalgia.'” This made me furious. I could feel his condescending tone.
Almost every visit with my doctor, he would prescribe some new medicine (which I now know he was getting kickbacks from, because they were always the meds he had samples of). I was on a constant roller coaster of side effects, systemic agitation, and withdrawal. He changed or suddenly took me off different antidepressants, benzodiazepines, and other meds regularly. When I complained that the meds where making things worse, he became increasingly frustrated with me.
As my new ailments continued to pile up, the help I was getting began to taper down. I was angry, depressed, confused, and losing hope by the minute. Then, I read this letter from a doctor and this article by another doctor, both expressing frustration in dealing with pain patients. They made sense. Although they weren’t helpful to my health, they did explain what was happening to me with doctors.
I am a very strong-willed woman. I have a booming voice, I am confident in my intelligence and research. I come to doctor's appointments prepared and I ask questions until I get an answer I am satisfied with. I thought that most of these things were characteristics of a “good patient.” It turns out, they're not. They are things that intimidate and annoy doctors.
So, I tried to tone it down a bit. I still came prepared and well-informed about my ailments, but tried to soften by voice and approach. Instead of forging forward with my thoughts, I started to try to make doctors feel they were the ones who came up with ideas for treatment.
I felt like a phony. And it really wasn't helping in the overall picture. Doctors “liked” me better, but I didn't get what I wanted out of them.
My multitude of ailments has continued to accumulate for years. All of it seems to have been kicked off by episodes of malaria, amoebiasis (a parasite infection) and typhoid fever when I was in Kenya. I returned to the U.S. and my health hasn't been the same since. I and many of my healthcare providers suspected a connection, but I've never been able to get too far with that theory.
What I have realized is that fighting to get diagnosed with fibromyalgia was not the answer I had hoped for. In fact, it was an excuse for doctors who can't find an answer of their own. Lately, no matter what I'm suffering from, there are three possible diagnoses: fibromyalgia, irritable bowel syndrome or the fact that I take opioids.
I can almost count on it. After a doctor tries one or two treatment approaches, and I don't respond in the way they hoped or within a time frame that is considered “normal” (which, by the way, I NEVER do), it's because I take pain medicine, have IBS or fibromyalgia.
Most recently, after multiple hospital admissions with acute upper abdominal pain and vomiting (and even after a test showed ampullary stenosis, scarring of the pancreas, and reoccurring episodes of pancreatitis) the doctor still did not want to “label” me with chronic pancreatitis. Instead, he decided it is because I have IBS or fibromyalgia. After I argued about those diagnoses, the doctor settled on “narcotic bowel syndrome.”
Once you reach a certain number of diagnoses, it's like they check out. I can feel it. When they see me coming, they begin to put off a vibe of annoyance and distrust. It's heartbreaking. I need them. I need to be given a fair shot. But they don't want to deal with me. I'm too complicated.
On top of it all, I’m told I read too much. More than one doctor has said, “Stop reading.”
It’s as though they want me to just trust everything they say and never challenge it. That would be nice. I wish I could. But how can I, when they use my need for pain medicine or my pre-existing diagnoses as a crutch?
Emily Ullrich suffers from CRPS/RSD, Sphincter of Oddi Dysfunction/Papillary stenosis, carpal tunnel syndrome, endometriosis, chronic gastritis, Interstitial Cystitis, uterine fibroid tumors, migraines, fibromyalgia, osteoarthritis, Periodic Limb Movement Disorder (PLMD), Restless Leg Syndrome (RLS), Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and IBS.
Emily is a writer, artist, filmmaker, activist, and has even been an occasional stand-up comedian. She now focuses mainly on pain patient advocacy as a delegate for the International 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.