One of the hardest things about existing as a human is that only you know how pain feels. There are no tests that reveal how much you are suffering. There is often no outward signs showing how much a person is in pain. There is no universal language for pain.
The other day, I went to urgent care to be seen for severe, sharp, cramping pain in my upper left abdomen, along with fatigue, sore throat, body aches. I could feel my body throbbing and spasming in pain all day, all night, at 3am when it wake me up. I could feel it pulsing in my arms and legs, like a heavy, gnawing pain. I could feel it in my chest when I took a deep breath, a burning, sharp pain in my abdomen, like I was being stabbed from the inside. Basically, I wasn’t doing well.
At the direction of my GI doctor (who is treating me for Crohn’s disease), I went to urgent care to be examined, for blood work, and for a CT scan. I was hesitant, because I’d certainly been in more pain than this before. I didn’t feel like I was having an emergency, but but this diagnosis is new for me, so I don’t want to risk it.
I wondered, what is an emergency for me, for you, for everyone?
Everyone handles pain differently—some may yell, curse and wrath in pain, while others remain silent and curl into a tiny ball.
I wasn’t screaming. I could still speak, but I was in a lot of pain—enough to get me to go to urgent care.
I wasn’t expecting an answer or a diagnosis of any kind. That’s not what they do there. They specialize in urgent care, not chronic care. I went to urgent care because I was in more pain than I could handle on my own.
I did expect that they would take me seriously and would attempt to manage the pain I was in—but instead, they complimented my shoes. First, it was the nurse that took my vitals who told me that I “look so healthy.” Then another nurse said it too. Then another. 9 total nurses complimented my goddamn shoes but couldn’t help me manage pain.
I didn’t even know what to say—I wanted to scream that I didn’t care what they thought, and that I wanted to not be in so much goddamn pain. But the words didn’t come out.
Was I trying to be nice? Was I even in as much pain as I thought I was?
I sat in a small hospital room in urgent care for six hours. The physical exam with the doctor took about 1 minute; she applied very light pressure around my abdomen, barely touching me.
How are doctors supposed to treat patients when they barely examine them?
“What’s your level of pain, on a scale of 1-10?” They asked, repeatedly.
7, sometimes 8, I’d say.
In my 10+ year journey through chronic pain, Fibromyalgia, and Crohn’s disease, I’ve learned a lot about pain, specifically the art of talking/writing about it, but when a doctor asks me to describe what the problem is, my mind goes blank and my words disappear. My dad always calls this “white coat anxiety.”
Doctors use the pain scale to better understand certain aspects of a person’s pain. Some of these aspects are pain duration, severity, and type. A patient self-reports their pain on a scale to measure pain intensity, and the doctor uses that rating, plus on observational (behavioral) and physiological data to come up with a treatment plan.
The thing about pain is that it’s subjective. Every single person experiences pain differently. One person’s 10 is another person’s 6.
This leaves the burden on the patient to accurately articulate and discuss their symptoms, and doctors to assess a patient based on a first impression. This also leaves patients at risk for under communicating their pain too. If one person screams in agony at a 6, but another person only screams in agony at a 10, how is a doctor/nurse supposed to treat and assess these two very different patients?
If you present well, i.e. not like a hot mess, they are less likely to take you seriously. Sure, I wasn’t bleeding out, and I also wasn’t screaming in agony. And I had cute shoes on, so I couldn’t possibly be in agony, right?
I realize now that I don’t actually know how to talk to doctors. Do you? I don’t know what words to use. I don’t know how to take the sensation in my body and turn it into words that a doctor can use to treat me.
Is there a class I missed? How to speak to doctors 101? How to talk about pain and suffering 102? I went to college, but I didn’t go to medical school. I didn’t take any pre-med classes. I didn’t take anatomy or microbiology.
Speaking to medical professionals is an art that no one knows how to practice.
When I’m in that room with their white coats and cold hands, suddenly I smile (sick people don’t do that), and say things like, “it’s fine,” even though I’m not fine.
If you Google “How To Talk To Your Doctor,” a super useless list comes up on the National Institute of Health:
- Write down a list of questions and concerns before your appointment. *reads off list, doctor still ignores it*
- Consider bringing a close friend or family member with you. Sure, okay. Another body in that tiny beige room.
- Take notes about what the doctor says, or ask a friend or family member to take notes for you. Yes, I really want to take notes when I am keeled over in pain. Of course.
- Learn how to access your medical records, so you can keep track of test results, diagnoses, treatments plans, and medications and prepare for your next appointment. But did you know they are scattered all over the internet depending on what doctors you’ve seen and where? Sometimes locked behind a subscriber ID number and complex security questions? And if you bring them a printed out copy of your records, they might not even look at them at all.
- Remember that nurses and pharmacists are also good sources of information. If you can get their attention between running around from patient to patient because of understaffing or battling insurance companies, sure.
Sooo… that’s not actually helpful at all.
How, as patients, are we supposed to advocate for ourselves when there are so many missing things in this system? I know I need to be assertive; I hit that red button so. many. times. If I’m not screaming in agony, do I even deserve care?
I know nurses and doctors work their asses off. I know they care. I know they want me to feel better. I know they’re doing the best they can. But I also know they’re likely exhausted, overwhelmed, and likely under paid. I know they probably see me, still looking pretty healthy, and don’t think I need help.
It’s an unfortunate and discouraging feeling as a patient, and as a person, to feel unheard when asking for help. I know I’m not the only one who has felt like this before.