By Emily Ullrich, Columnist
Some of you may have noticed I’ve been silent for a while. I’ve been shirking my duties to the pain community because I am so fed up that it all seems futile.
I’ve been struggling with feelings of defeat and guilt at my unusual inability to muster the courage to continue. I have been deeply introspective and, for once, I’ve had no words for the profound emotional disenchantment that one experiences when they realize that most doctors really don’t care.
My mother tells the following story about me when I was a little girl, and it struck me that this feeling I have today is the same one I had when I realized there was no Santa Claus.
She says that I essentially disassembled the entire house of cards that kids are brought up believing in. She says I was lying in bed when I asked her if Santa was real. She attempted an explanation that Santa was the spirit of Christmas and that he wasn’t an actual person, but that his essence was within all of us. According to her, I went on to ask if there was an Easter bunny, a tooth fairy, or even a God.
A few years later, I left the sheltered life of Montessori school, where creativity was valued, analytical thinking promoted, and social interactions remained innocent. I entered public school in the midst of puberty. Despite my many futile attempts at preppy mall fashion, and rehearsed and repetitive social coolness, I could not blend in.
To my dismay, my quirky, outside-of-the-box thinking betrayed me daily. I became the weird, socially awkward, politically and culturally over-saturated smart girl, wearing the body of a 6-foot tall woman. As a writer, these experiences have given me a unique lens through which to view life and are now the things I pride myself in.
As a chronically ill patient, I have been thrown right back into the post-traumatic stress of that time, my intellect and strong personality are not seen as behaviors of a good patient. I feel l have to be a fake to get the care that I need. I feel this sensation washing over me every time I have a doctor’s appointment, surgery, procedure or hospital stay.
I’ve written before about the inhumanity and cold, cruel treatment I have received more times than I care to remember. I am aware that there are doctors and nurses who do care and actually want to help, and I have been blessed more than a few times with having these amazing people as my caregivers.
But if I am truly honest, more often than not, these gems of humanity are not the ones we patients get.
I understand that they’re at work, doing a job, and they have to do more for us than the usual patient. Some are also jaded, uninformed, insensitive and, frankly, shouldn’t be in this line of work.
When a patient’s life, health, and attitude are psychologically and sometimes physically neglected, disrespected, and infused with negativity, it’s scarring. It plays over and over in your head. Although it’s really hard to control my temper and emotions in this situation, I do my best. It’s not natural for me. I am opinionated and strong-willed.
I’ve learned the hard way that when I act how I feel like acting, my care gets even worse. I always wonder what I could have or should have done differently to make the situation better.
I know that I am probably coming across as very negative, but there is one thing that I know about myself -- when I am at my worst, I am often at my best. What I mean is, I want to make others around me comfortable, and the more serious a situation is, the more I try to bring levity and positivity. I try to make people feel at ease, to laugh, and to know that I am grateful for their help. I make a point of being very polite to my caregivers, even when I’m frustrated with them, and I make a point to ask how their day is, even if they haven’t asked about mine. This leads me to my most recent hospital stay.
My Latest Trip to the ER
I went to the emergency room because my home healthcare nurse demanded it after noticing that my arm with a PICC catheter line was very red and inflamed. As usual, the ER doctor treated me like I was there for fun. Because waiting for 6 hours in a room full of sick people and being treated like crap is everybody's idea of a good time!
It turned out that I had pulmonary embolisms -- blood clots in my lungs -- a life-threatening condition which frequently causes stroke or heart attack. The doctor scolded me that I should "take this seriously," as though I got the clots from doing some sort of illicit behavior and was obviously careless about my health. I wonder if it ever occurred to him that maybe I was taking it seriously -- by going to the damned ER!
He then launched into a lecture about the evils of pain medications, and even alluded to the doctor’s oath to "first do no harm," insinuating that the doctor who prescribed my pain medicines (who happens to be the kindest, most compassionate and knowledgeable doctor I’ve ever had) was not helping me, but harming me.
He assessed all of this in two minutes of talking at me, not to me, and without any idea of the myriad health conditions I live with. Sick, and even sicker of dealing with this re-run of the C+ med student-come-doctor with a God complex, I mustered the energy to stand up for myself. I argued that this was probably not the best time for a discussion about changing or completely discontinuing my medications, seeing as I had pulmonary embolisms to worry about, and a pain doctor whose specialty it is to deal with that was not present.
God forbid, I had challenged his almighty ER doctor knowledge and here's where it got good.
He decided to un-diagnose my Reflex Sympathetic Dystrophy (RSD) -- an extremely painful and complicated condition I was finally diagnosed with after two years of surgery, doctors’ visits, and being told there was nothing wrong with me that a knee joint replacement and antidepressants wouldn’t fix.
Then I spent three days in a hospital being run through a battery of tests and a whole team of doctors had agreed on my diagnosis of RSD. It’s an illness that I take medications for, have physical therapy for, use a cane for, and which you can tell I have just by looking at my knee -- which he never did.
"You don't have RSD," he said. Based on what? Maybe the fact that I wasn't screaming and writhing in pain, as he thought I should be?
"Did a neurologist diagnose you?" he asked. I explained that I spent days in the hospital having a battery of tests and a number of different specialists all agreed that I have RSD. Again, he asserted his disbelief, without ever looking at my knee!
Begrudgingly, he admitted me to the hospital, as though I intentionally manifested blood clots in my lungs just so I could hang out with his charming self. He also lectured me further about the gravity with which I should treat this situation.
I wonder since if he has ever thought about this interaction with me, and in any small way realized the hypocritical irony that his entire discussion was loaded with.
I can't stop thinking about what happened. Or where Santa went to.
Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis, Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis
Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy 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.