by Abby Norman

“Jesus — ow.”

I remember uttering as I stepped into the shower. It was a crisp autumn morning in 2010. I was a sophomore at Sarah Lawrence College and this particular morning was just like every other: except for the nagging pain that I had in my abdomen. Throughout the course of this shower, it started to hurt so bad that I stumbled out, thinking I might vomit, only to be met with a hazy, spinning feeling that would only get worse as the day wore on.

Pain is different for everyone. My roommate might have had a higher or lower tolerance for this type of pain, had she been the one doubled over in the bathroom that morning. While I kept saying it felt like “pressure” as though something was going to rupture and that it “ached all along my right side” and later, in the emergency room, that it was a “searing pain just under my right hip bone.” — she could have described it very different, had it been her.

Pain is one of the most complex of all human experiences; it is universal, almost entirely subjective and runs infinitely along the spectrum toward positivity and negativity. Pain can be desired or unwanted. It can be self inflicted or dealt. Even the ways that we describe pain vary wildly; aching, burning, crushing, piercing, numbing, pounding, sharp, shooting, stabbing, tearing, throbbing. Still, communicating our degree of pain can be difficult; How would we describe it on a scale of 1 to 10, 10 being the worst? Well, what is 10? Are we comparing it to the worst pain we’veever felt or the worst pain we can imagine feeling? Trying to assess and treat pain remains one of medicine’s most frustrating tasks.

Our bodies are of incredible design. When something goes wrong, an infection occurs or a bone breaks, our internal wiring sends a message to our brain to interrupt this broadcast so that we can address the cause of this feeling, this sensation that has arrived in our consciousness. Unable to ignore the input, our bodies begin to react to our perception of pain; our mouths turn up in a grimace, our eyes narrow, we clutch or rub the spot that burns, aches, throbs or pounds.In extreme pain, our breathing shallows, our bodies writhe and bend, our minds look for any escape, any way out of the body that is now an enemy. When the pain becomes chronic, our bodies are resourceful and they survive. They adapt to the pain signals. They reroute and rewire major landscapes beneath our skin. We become so intimately entwined with our experience of pain that it becomes our part of who we are. The phrase “in pain” is an elegiac descriptor of the experience; because when we are suffering, we are in pain. Pain puts up walls around us, narrows our lives. We find ourselves holding up within a tiny, hollow world where it is only our pain, and ourselves.

To say that we are inside the pain, living in it, is all too apt.

WHERE PAIN BEGINS

The sensation of pain begins in your peripheral nervous system. The nerves that tunnel under your skin react differently to various stimuli; a light touch, a tickle or a punch will all elicit a unique response from these nerves. The feeling of “pain” comes from a specific type of receptor, called nocicepters (no-see-sep-tors), which detect temperature, pressure and stretching in and around our bodily tissues. When nocicepters are triggered, a nerve impulse is sent to the spinal cord and, subsequently, the brain. However, in the case of sudden injury or the threat of a worse injury, your spinal cord is capable of some decision making: reflexes originate in the spinal cord. The dorsal horn is responsible for these “quick thinking” choices that cause you to wrench your hand quickly away from the hot stove. When the impulse reaches your brain, it is at this point that you “feel” pain; because just because you’ve taken your hand off the hot stove doesn’t mean your burns will go away. Your brain not only learns from the experience of pain, but it must then rationalize what to do in order to heal the injured body part.

Healing begins in the brain.

Your brain starts asking itself rapid-fire questions about the pain:

Is it sharp? Has this pain been felt before? Is it worse than the last time? Where is it, exactly? Is it spreading? Would a kiss make it better?

By the time the pain signal arrives in the thalamus, it approaches the limbic system, which decides whether or not this pain will make you cry.

(So, the answer to that last question is left up to the limbic system.)

IT SEEMS SIMPLE, RIGHT?

Unfortunately, pain is far more complex than this overview might lead us to believe. The true experience of pain is not as linear and well-defined as theory states. Everything else that is going on in your environment — and everything that has ever gone on in your environment during a painful moment — influences how your brain will process painful stimuli.

Which means we all experience pain differently.

To even further complicate things, there are two distinct types of pain.

When we discuss pain, we are either talking about somatic pain or visceral pain. The major difference is location: somatic pains arise from tissue and skin, while visceral pain come from inside, in the viscera and internal organs. Nociceptors detect both types of pain and when the injury heals, they stop firing. The injury stops hurting; the ache subsides.

I have a chronic, progressive inflammatory condition called endometriosis. With this condition, the cells that make up the tissue that lines a woman’s uterus finds itself implanted in various spots outside of the uterus — fallopian tubes, ovaries, the uterine cul-de-sac and intestines are common sites, though some women have had it travel to their lungs and even their brain. That tissue is identical to uterine tissue that is shed during a woman’s monthly period — so it reacts to the various hormonal fluctuations that are part of a woman’s menstrual cycle in the same manner — it bleeds no matter where it is. Of course, since it’s not near the vaginal vault, it has no escape route. Instead, it bleeds and reforms on the same hormonal cues as the uterine lining, but causes inflammation and irritation since it remains inside the pelvic and / or abdominal cavity.

In short, it hurts. It hurts a lot. It’s a gnawing, grinding kind of pain for me. A pain that swells and has been known to knock the wind out of me or make me lose my thought in mid-sentence. In my experience, it is at its worst and most intolerable level right after I’ve finished a period — presumably when the lining is beginning to regrow. I have one fallopian tube and ovary that have been ravened by it and it wears the scars of a “chocolate cyst” — ovarian cysts that form and fill up with brown, sticky old blood that’s the consistency of fresh tar and about as pleasant to discover in your underwear. In addition to the pain, endometriosis makes me perpetually nauseated, fatigued, hormonally unstable at best and deeply depressed at worst, not to mention the referred pain of sciatica, the near inability to have a bowel movement or urinate when the pain is at its height and the excruciating pelvic pain associate with sexual intercourse and orgasm.

I no longer have a sex drive. I no longer enjoy food. I live for heating pads, anti-anxiety pills and cheap underwear that I don’t mind ruining.

Doctors don’t like chronic pain — and they’ll be the first to tell you that. Medical school teaches you to diagnose and treat — not manage. Pain is seen as a sign of something else, but is rarely looked at as a disease all its own, with its own story. Healthcare has evolved to be a business because in the last several decades, doctors were paid according to what tests they ordered and not necessarily the health of the patient. A doctor could, essentially, write an invoice for whatever treatment they offered the patient and be reimbursed for that amount — regardless of whether or not the patient’s problem was solved. Therefore, medicine became about the exchanges between the provider and the payer, not the physician and the patient.

It soon became quite obvious that medical professionals and hospitals had no incentive to get patients feeling better — in fact, they had financial incentive to keep them sicker. This was, of course, completely unsustainable, and now we’ve arrived at a point where American healthcare as-is can’t sustain itself. So, there’s currently a massive reform underway that aims to regear providers to keep patients out of the hospital. Gone are the days when they can invoice for every single test they order — now they get paid a set amount and have to make do. They have to provide quality care that’s also cost-effective. They are penalized for poor patient outcomes and, in addition, poor patient satisfaction ratings. It’s no longer enough for a doctor to be capable of ordering a test or writing a script — they’ve got to smile, too, and be agreeable and warm. They have to document all of this, of course, dotting their i’s and crossing their t’s with pathological precision, lest they be audited or sued by a disgruntled patient.

What could be the greatest foible, then, for the modern physician?

A PATIENT WITH CHRONIC PAIN.

“How would you rate your pain on a scale of 1–10?”

I’m in pain every day of my life to some degree, so if I answer this question by saying, “Well, right now it’s about a five.” and the nurse jots it down, but another patient who is hardly ever in pain comes in and states that their pain is at a five, what does that statement of “pain at five” become? The pain scale was originally designed to be used this way — but doctors and nurses aren’t able to articulate it, and patients (with health literacy levels bottoming out around a 7th grade reading level in the U.S.) aren’t able to comprehend it. Particularly when they’re sick, scared and in pain.

Pain is relative — not just between individuals but also within an individual themselves. Before I began living in chronic pain, the pain I feel right now, typing this, would have felt like a six or a seven — enough to keep me off my feet and maybe even enough to consider a trip to the ER, for fear of something acute. Now, I’d say it’s maybe a four — and this is baseline for me now. Pain relative to the only thing I know — previous pain.

My five and your five are different and they always will be. If two patients are both at a five and one of them is writhing on the gurney and the other is calmly texting on their phone, then the doctor who walks in the room to examine them is going to make some immediate assumptions about the root cause of their pain, their pain tolerance and perhaps even assume that one, or both of them, are drug seeking. How could they not? The only experience they have of pain is their own. They bear witness to the pain and suffering of others, they understand how neurons fire, how our skin sends those firey fast impulses, but they can’t really understand how it feels.

WE QUANTIFY PAIN WHEN WE SHOULD BE QUALIFYING IT.

No surprise, since “hard science” isn’t much for feelings.

When we talk about pain, to each other, to ourselves, to our doctors, we have to speak in relative terms and we need to broaden our language. Doctors will, when prodding further into the source of pain (sussing out whether it’s acute or not) they’ll ask for words to describe it — is it gnawing, dull, achey, stabbing? Is it worse in this position or that position? Can you jump up and down? Can you lift this leg? The patient is impatient, the doctor is impatient — both of them just want it to end.

In an ideal world, we’d have a conversation about pain, not an inquisition. Doctors notoriously don’t have time for this, though. I propose that’s the first of many major changes: healthcare needs to be a dialogue, not a monologue. We have to stop having the patient come in, give their speech, and then hear the doctor’s rebuttal. It needs to be an exchange.

We need to frame the experience of pain on life’s terms. Instead of asking about the pain’s rating on a numerical scale, we need to use language that we can understand by using our own experiences, especially the experiences that we share.

Has the pain made you lose your appetite? Is the pain too much for you to ride your bike, to walk your dog or to do activities around the house? Are you able to be intimate with your partner? Can you comfortably drive a car or sit through a movie? How often does the pain keep you awake at night or wake you from your sleep? Does the pain keep you from doing activities that you used to enjoy, like hobbies or sports? Are there times when you “forget” about the pain or it lessens? When does that happen — why do you think that is?

Some doctors are already thinking this way and requesting that patient’s keep pain diaries or journals. There are apps that help patients chart and measure their pain from day to day. These are great strides forward — but the doctor still needs to have the time and wherewithal to look at them — to really see this “patient reported” data. They need to be open to the idea that the patient is their own specialist and their own best advocate.

Historically, physicians were gatekeepers to knowledge that has now become wide-spread through the wonders of the internet. It’s easier than ever before for patients to find information — but not necessarily understand it. Instead of bringing a patient into understanding their own bodies, doctors get defensive — they believe that they have to keep these medical secrets. So they chide their patients for wanting to understand. They throw out terms like “hypochondria” and sometimes go so far as to discharge a patient from their care if they are “difficult.”

Patients don’t want a med school education. They aren’t trying to compete with a doctor. They’re trying to work together in order to understand what’s happening inside them. Whereas doctors go to medical school to learn about everyone’s collective pain and suffering, patients go to Google only to try to identify theirs. So too when they come into a doctor’s office, books in hand, folders bursting with records and lab slips.

This guest post was written by Abby Norman and is reprinted here with permission. Abby lives with endometriosis and strives to bring attention to the condition. She is a reporter and writer based in midcoast Maine. Her work has appeared on The Huffington Post, Alternet, The Mary Sue, Bustle, Medium and recommended by Time Magazine and NPR. This fall she will be speaking at Stanford’s Medicine X conference. Follow her on Twitter: @abbyexplains.