Care Needed, Urgently
I was randomly flipping through my health journal the other day and came across some pages that I had furiously scribbled upon, five to be exact, back in May 2017. Usually the pages of this journal are used for reminder notes for doctor appointments, health to-do lists, and summaries of medical appointments. So what was I writing about for five whole pages in an obviously angry hand? Well, I felt it important to document as much as I could about what happened at a particularly infuriating urgent care appointment. I wanted to remember for my own sake, but I also wanted to remember the details of the experience in order to report it to a clinic manager. What got me so worked up at urgent care, you're wondering? Simply put, I was treated like a criminal and a drug addict.
With a splitting, throbbing, skull-crushing headache, I went to a local urgent care clinic on May 11th, hoping to receive some adequate pain relief. My head pain was constant and debilitating and a side effect of the Rituxan infusion I had just received. I felt as though someone were stabbing the backs of my eyeballs with ice picks while my head was squeezed tighter and tighter, locked in a steel vice. Not fun. All I could do was lie around on the couch alternating ice and warm packs on my head; sleeping was definitely out of the question. I've always had a high tolerance for pain, but this was bad.
After waiting a ridiculous amount of time slumped in a waiting room chair in agony, my name was called and I trudged after the nurse while holding onto my ice pack. Despite my intense pain, I was very nervous and on edge about going to urgent care to ask for pain medication. Chronic pain patients today are invariably lumped together with everyone who takes, uses, or abuses any kind of opiate drug. More and more I'm experiencing feeling stigmatized, criminalized, ignored, and unheard by providers during the rare few times I need pain medication right away, such as at urgent care. I'm also not alone; several of my RA friends are also facing mistreatment and difficulty getting pain relief that they legitimately and desperately need.
Here's an excerpt from my journal about that night I went to urgent care. It's probably the worst urgent care experience I've had so far regarding opioid medication. Well, it might be a tie with the PA in New York City who literally yelled at me in the office. Whatever the case, this shouldn't be happening. Patients shouldn't be treated like they're subhuman pieces of dirt. Ever.
Urgent Care, 5/11/17, 5:30 PM
The PA I saw was rude, very dismissive and kept shutting me down and refused to listen or have a real conversation with me. She only focused on the "warning" that popped up on her computer screen saying there's a possible interaction between Toradal and methotrexate. She refused to listen and understand that Dr. B [my rheumatologist] said it was OK for me to have Toradal while taking methotrexate. My primary care doctor had given me a shot of it for the same headache pain recently, too. The PA could have looked this up in my chart, but she didn't. When I asked her about oral pain medications, such as Vicodin or Percocet, she smirked and half-laughed at me for asking this, as she looked at my chart and saw that I go to a pain clinic [I was out of meds a week early]. She looked at me like I was being ridiculous or stupid and refused to try to understand my complicated situation. She coldly told me to go to the ER if my pain was that bad. At first she said she would give me a higher dose of ibuprofen but later refused to prescribe even that. She wouldn't listen or even talk with me except for telling me repeatedly to go to the ER. She then turned her back on me, ignored me trying to talk to her, and left the exam room. I was left in the room not knowing what to do. Were we done? Was a nurse going to come in? I stood up and went into the hallway and waited until she came out of another room. I asked her, "What's going on? Is a nurse coming in here?" She replied, "No. I told you, go to the ER." Then she turned her back on me and walked away. She had no compassion or empathy or patience with me. I felt like she didn't even understand what I was talking about. She refused to believe that I was in extreme pain and needed help.
After the PA literally turned her back on me, I went to find her supervising M.D. and explained the situation to her. The physician said that I could have the shot of Toradal after reviewing my chart and seeing that I've had it in the past (she wouldn't budge on the opioids). However, she said that the PA would have to be the person to prescribe it because I was her patient. When I tracked the PA down again and asked if she could please give me the shot, she refused, which wasn't surprising. She was clearly unhappy with me because I was "trouble" and I didn't immediately agree with everything she said, and I dared to talk to her about it. I might as well have been talking to a wall, though. She wouldn't listen or try to understand or, sadly, help ease my pain. I told her that the thought of going to the ER and sitting in a noisy and crowded waiting room was too unbearable to even think about. Feeling like the middle of my head was impaled with a thick steel rod made my lack of options glaringly clear: there was no way I was going to sit in the ER while in so much pain. I was also exhausted and fed up with the whole thing.
When I realized that nobody at the clinic was going to help me, I tiredly gathered up my belongings and left the building in defeat. My head was practically exploding at this point after all of the waiting, stress, and my teeth unconsciously set in a tight clench. A tear or two (or many) may have also welled up in my eyes an rolled down my cheeks. Unsurprisingly, the fury and frustration and shame of being so rudely dismissed not only a patient, but as a human being, added greatly to my pain. I'm not a criminal or a drug abuser and neither are many others who are in similar health and chronic pain situations. The behavior and bedside manners of the PA and her presiding physician is incredibly unacceptable and unprofessional.
Before leaving the clinic that night, I stopped at the front desk and asked for the contact information for the clinic manager. The young woman at the desk handed me the manager's business card which I carefully tucked into my wallet; I was livid and planned to call her the next day. Well, we began a game of phone tag and I never wound up speaking to her about the "incident" with the urgent care PA and physician. Yet as I read through my notes again right now, I'm flooded with fresh feelings of anger, indignation, and disappointment. Picking up the phone and making sure that I do speak with a manager soon will be one of my top priorities for 2018. No patient, or person, should have to endure the demoralizing treatment that I did. If I can possibly save someone else from being criminalized and shamed by the healthcare system, then my suffering was worth it.
We are human beings who fight hard every day against the physical and emotional pain of RA. We need to be listened to; understood; and treated with dignity, kindness, and respect. Our pain is real and it needs to be believed.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?