04/02/2026
🤜🏼I say pain scales are rubbish and it’s relative to each condition a person has.
✊🏽Replace it with a functional rating.
🤦🏼♀️Why you say "It's a 4" when a healthy person would be screaming?
"Rate your pain on a scale of 1 to 10." It is the most common question in medicine, and for people with Ehlers-Danlos Syndrome (EDS), it is also the most dangerous.
Why? Because we are speaking a different language from our doctors.
The "Chronic Calibration" Error. For a healthy person, "0" is no pain. "10" is the worst pain of their life (usually a major broken bone or surgery). For us, "0" doesn't exist. We live at a baseline of 3 or 4. Just existing in gravity hurts.
Because our brains are constantly bombarded with pain signals, we "recalibrate" the scale to survive. According to information from the Ehlers-Danlos Society, people with Ehlers-Danlos syndromes often cope with pain from issues like subluxated ribs, so they can manage daily tasks and interact with their families. "That's a 5. It's annoying."
* A twisted ankle? "That's a 3. I can walk it off."
The Danger in the ER. Here’s how the mismatch can affect you: Imagine you enter the ER with a serious injury, calmly tell the doctor, "It's about a 6," and the doctor interprets this as, "This is distracting but manageable." What the doctor doesn't realise is that your "6" would register as a "9" for someone without your experience of pain.
Conversely, if you say, "It's a 10," but you aren't screaming (because you learned years ago that screaming doesn't help), they label you as "drug-seeking" or dramatic.
🤸✔️The Solution: Replace numbers with a Functional Rating. Numbers are subjective; function is concrete. Next time a doctor asks for a number, give a Functional Rating instead:
* Instead of "It's a 7," say: "I cannot stand up long enough to take a shower."
* Instead of "It's a 5," say: "It is distracting me from conversation, but I can sit still."
* Instead of "It's a 9," say: "I am unable to think, move, or speak due to the pain."
Your endurance is remarkable; let’s channel it toward securing timely care rather than masking need. Don't let your high tolerance become your barrier to care. You don't get extra points for suffering in silence. Remember, seeking help is a strength, not a weakness. Prioritising your well-being shows courage, and your health should always be a priority without any guilt.
👇 Tell me: What is the worst injury you walked around on because you thought it was "no big deal"?
Educational discussion only. Not medical advice.
sources:
Open Resources for Nursing (Open RN); Ernstmeyer K, Christman E, editors. Nursing Fundamentals [Internet]. 2nd edition. Eau Claire (WI): Chippewa Valley Technical College; 2024. PART XI, COMFORT.
Mankoski Pain Scale / Functional Pain Scale principles (This is the standard name for the "Functional vs. Numerical" method used in chronic pain advocacy).
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