From 0 - 78

What Does Your Pain Feel Like?

Use the following words to describe your PRESENT pain. Circle ONLY the words that best describe it and note the point value. Leave out any category that is not suitable. Use only a SINGLE word in each appropriate category - the one that applies best.

As a student, nothing sent me into worse anxiety spirals than the words “select the best answer.” BEST meant every option was correct, contrary to my logic of ONE answer for every question. Now I needed to squint at the list and decide what sadistic frame of mind the professor was in to figure out which one he wanted that day.

I broke out in a cold sweat, felt my blood pressure climb, and pressed my hand against a blooming migraine.

Did he want the answer that made the most sense in the context of the chapter we most recently finished? Or the statement that applied to the overall subject of the class? Maybe the letter I hadn’t used yet on the test? The letter I HAD used six times in a row? (Everyone had THAT professor at least once in their educational career)

“Best” carried implications - good and bad. It exerted excess pressure, and I wasted excess time examining every statement, weighing facts and dissecting everything from grammatical context to historical significance before frantically making a selection as time ran out.

Assigning a “best” to pain scores is no less fraught. When I use a higher number, medical staff arch their eyebrows. The “are you sure?” is implied in the question mark at the end of their words. It adds tension to a situation that’s already stacked against me. And if I erase a circle or try another, it turns me into an indecisive lunatic.

Congratulations, now I’m a drug addict playing eenie-meanie-miny-moe with a “scientific” assessment.

Category 7: Thermal

1. Hot

2. Boring

3. Scalding

4. Searing

When we lived in Boston, my parents brought lobster home one night. Live lobster scuttling around the kitchen floor while a massive pot on the stove came to a boil. The claws were closed with blue and green rubber bands - an unfair advantage as my sister attempted to pluck at their eye stalks.

I heard the high-pitched shriek of air escaping the carapace when the first lobster went into the pot and panicked. I thought the creature was screaming in pain at the scalding water. The novelty of getting to try the delicacy evaporated. I accused my parents of torturing the animals. It took ages for them to reassure me the sound wasn’t coming from the creature itself.

Especially after I witnessed the shell’s transformation in color from dark reddish-brown to violent crimson.

Scalding took on a new meaning.

Tim tries to label the shower scalding when I set the temperature. He insists he’s turning into a lobster, despite any evidence of bright red skin.

Personally, I think he’s a baby.

Category 16: Evaluative

1. Annoying

2. Troublesome

3. Miserable

4. Intense

5. Unbearable

I’m a riot recovering from anesthesia.

Or so my family tells me.

The drug cocktails that fail to render my nerves numb to pain turn my brain cells into incoherent goop. I regale visitors with stories of ventures to Mars, explorations of the Amazon, and complex scientific equations Einstein failed to consider. Not to mention entertaining shows of attempting to turn my blankets into clothing. (No video exists of these performances - upon penalty of death)

Medical staff are less impressed with my demonstrations.

Probably because they see me when the first raw edges of the medications wear off, leaving my nervous system exposed.

After my partial hysterectomy (uterus and fallopian tubes), I woke screaming and thrashing in the bed. I lay buried under heated blankets to control constant shivering waves (organ removal bottoms your core temperature). I tangled them as I fought to get away from the unbearable pain.

I couldn’t open my eyes, but I COULD cry.

A nurse pressed my arms down while another injected hydromorphone through my IV. I felt their presence looming over me. And while my ability to reason was lost in lightning-sliced cotton, I heard the stern words clearly, “Other people are trying to rest. They don’t need to listen to you carry on.”

The hydro didn’t last long (post-op pain is a thing of wonder and beauty for chronic pain patients), but the words DID. I knotted my hands in the blankets, curled up on my side, and cried into the pillow.

Category 19: Sensory

1. Cool

2. Cold

3. Freezing

I never managed to dress “cool” as a kid. Despite childish longing, I showed up to class in hand-me-down bellbottom jeans (carefully folded over and rolled up to disguise their wide legs - anathema in the 80s) and hand-knitted sweaters. My sneakers were off-brand, and my perm turned me into a poodle.

My early adult years were spent in scrubs - a “shrug” of indifference. At long last, I looked like everyone else. Provided I didn’t attempt to engage in social activities outside of work, at any rate.

Now, I’ve developed the fashion sense I was denied all those years ago. Drawers and closet full of leggings, tunics, dresses, and kimono robes covered in patterns and characters that define my personality. Boots and platform sneakers embossed with glitter and fairy wings. A wardrobe of laughter and genuine, “I don’t care” imagery.

And 99% of the time, it’s buried under sweatshirts, sweatpants, slippers, and hoodies.

In the depths of blistering summer, with record temperatures cracking thermometers outside, I close the vents and huddle in blankets. During the winter, I pile on uncountable layers and sneak the heating pad onto my chair.

Under the marshmallow of twenty layers of insulating fabric, though, my outfit is adorable.

Category 20: Affective-Evaluative: Miscellaneous

1. Nagging

2. Nauseating

3. Agonizing

4. Dreadful

5. Torturing

“Ask your mother.”

”Ask your father.”

It’s a parental prerogative to send children bouncing back and forth for permission, particularly when they’re seeking something they deem necessary. Adults place wagers on how many times they can send a hopeful youth ping-ponging through the house before the child concedes defeat or calls them out.

I was a pre-teen before I realized hearing the two lines equated to a “yes.”

The medical system isn’t as generous. There’s no single entity available to answer pleas for assistance. Instead, doctors fracture into specialties and send you scrambling from office to office. A medical history record turns into a realistic Rock of Sisyphus - destined to roll back on you at any moment.

I’m entering Day 7 of horrific pain in the region of my stomach and pancreas that gets worse after I eat. Contemplating food of any kind makes me nauseous. After avoiding meals last weekend, I caved to Tim’s pressure and called my PCP.

She suspects a gastric ulcer.

But while she can prescribe medications and diet adjustments to make things easier, she isn’t a gastroenterologist. I need a referral to another office to get the endoscope to confirm the presence of the injury in my stomach lining.

My PCP likes me to follow up if a referral hasn’t set up an appointment within 48 hours. And they gave me the direct number to the GI office when that window passed with no phone call.

“We haven’t received the referral through our system yet.”

I tried to protest, confirming my PCP sent it Tuesday. “It’s electronic; it’s not like someone’s walking it over there.” (Although the two buildings are close enough for a walking courier to arrive within 48 hours)

“It’s electronic, but that doesn’t mean our technician has gotten to it yet. I don’t know when they will.”

It’s fine.

It’s not like I want to eat food.

Or get through a day without pain.

How Does Your Pain Change with Time?

Which word or words would you use to describe the pattern of your pain?

1. Continuous/Steady/Constant

2. Rhythmic/Periodic/Intermittent

3. Brief/Momentary/Transient

Anything continuous loses its impact. A constant state becomes familiar and, thus, fails to generate the same sense of urgency as a sudden, new change. (Better to break your leg than drag around a foot screaming with electrical impulses)

Chronic pain patients adjust to their lives in hell.

It’s our due - the toll for daring to house a broken nervous/immune/circulatory/gastrointestinal/musculatory/skeletal/cardiac/adrenal system.

Do the following items increase or decrease your pain? (Add 1 or subtract 1)

1. Liquor

2. Stimulants (coffee or tea)

3. Eating

4. Heat

5. Cold

6. Damp

7. Weather changes

8. Massage or use of a vibrator

9. Pressure

10. No movement

11. Movement

12. Sleep or rest

13. Lying down

14. Distraction (watching TV, reading, etc.)

15. Urination or defecation

16. Tension

17. Bright lights

18. Loud noises

19. Going to work

20. Intercourse

21. Mild exercise

22. Fatigue

Does living increase my pain?

Does breathing increase my pain?

Holding my breath does. (Remember threatening to hold your breath as a child? And adults waiting until you passed out? Good times)

Haven’t figured out a way to determine if dying would DECREASE my pain. But I know waking up without pain WOULD convince me I was dead.

How Strong is Your Pain?

People agree the following 5 words represent pain of increasing intensity. Answer each question below with the most appropriate word in the space beside the question.

Which word describes your pain right now?

1. Mild

2. Discomforting

3. Distressing

4. Horrible

5. Excruciating

I often wonder who the “people” are that scientists and medical professionals speak with when they develop protocols.

The same generic, healthy population they use to test medications, treatments, and therapies? A cross-section of randomly sampled individuals who don’t know the state capitals? Or a reasonable selection of patients who may experience a malfunctioning body at some point in their lives?

Reporting pain scores grows tedious over time.

The same selection of cartoon faces, none of which resemble a chronic pain patient. I’m incapable of describing a number by the time tears are streaming down my face; excruciating is too mild a word to categorize things. Yet I can say “15” with complete sincerity - and still sit upright.

Nurses and doctors frown when you deviate from the 0-10 scale.

I want to take their hand and squeeze, offer to let go when I feel they comprehend the level of pain I’m experiencing.

Somehow, I doubt anyone would accept the offer.

Interpretation

• Minimum pain score: 0 (Would not see in a person with true pain)

• Maximum pain score: 78

• The higher the pain score, the greater the pain

There are 0s on pain scales.

Why?

Why does the medical community ask for pain measurement, even for painless, harmless conditions? Is it a chance to rub comfort in the face of everyone suffering? (Congratulations! You go ahead of everyone writhing in agony!)

Or is it another way to punish a person for daring to feel outside the bounds of “ordinary?”

The closer you creep to the upper reach of a scale, the more scrutiny you find yourself under. No perfect scores allowed in medicine.

It’s a way of teaching patients to devalue, undercut, and question what they feel. The seemingly “harmless” question contained within the words, “How bad is your pain on a scale of 0-10?” They watch you sort through numbers, waiting for you to dare to use that two-digit response that immediately lands you in a category of suspicion.

Drug user. Hypochondriac. Liar.

I am a liar.

I never give an honest answer to pain scales. The system taught me to round down. And with no physical evidence of the pain, my scores slide past the examiners unchecked.

I’m only hurting myself. (The irony)

*Adapted from the McGill Pain Questionnaire