Understanding disease burden—how patients talk about chronic pain

How do patients talk about the disease burden of chronic pain in their lives?

To help answer this question for the Food and Drug Administration (FDA), the Inspire research team received a grant from the FDA to learn more about the patient journey, treatment discussions, unmet needs, and barriers to care that people with chronic pain face every day.

An estimated 20% of Americans live with chronic pain that negatively affects quality of life. The total annual cost of treating chronic pain is between $560 billion and $635 billion.

Project focus: Understand the impact of living with chronic pain

The focus of the case study was to understand how people meaningfully explain the burden of their chronic pain. Inspire researchers analyzed the word choices (lexicon) that people with chronic pain used in online community forums and social media posts.

Inspire solution: Combine natural language processing and linguistic analysis to understand the disease burden of chronic pain

Inspire worked with the FDA to identify key terms to use with Inspire’s natural language processing (NLP) system. This technology mines large unstructured text datasets to find specific patient experiences. 

Using the key terms, the NLP system identified more than 150,000 member posts on Inspire, as well as more than 4 million open-source posts on public social media sites. Researchers narrowed the datasets and used NLP to conduct an automated analysis of 21,335 open-source and Inspire posts. 

Researchers also used linguistic analysis structures and manual sociolinguistic coding to identify broad linguistic trends in 746 Inspire and open-source posts.

Inspire findings: Using the language of chronic pain patients can lead to better care

Findings from the case study suggest that market researchers need to better understand the language used by those with chronic pain so they can use this emotionally compelling language when translating product information. The case study also provided insight into the significant unmet needs of people with chronic pain.

Illustrated cartoon of a group of individuals sharing their thoughts

Understanding the lexicon of people with chronic pain

The linguistic analysis identified seven categories that people use to describe chronic pain.


Subjective scales: People tend to internalize the pain scales that healthcare providers use, such as “new level of pain” and “very severe.”


Quality-of-life impact terminology: People use words like “disruptive,” “disabling,” and “struggle” to describe how pain affects their ability to enjoy life.


Frequency and length descriptors: As people track the timing and intensity of their pain, they favor words like “daily,” “intermittent,” and “unceasing.”


Adjectives characterizing different pain types: Common pain descriptors include “burning,” “throbbing,” “radiating,” and “sharp.”


Validating language: People use words like “actual,” “legitimate,” “serious,” and “real” to legitimize their need for prescription pain medications and overcome stigma associated with the opioid epidemic.


Imagery and metaphor: To paint a picture about the severity of their pain, people use metaphors, such as “razors,” “swarm of bees,” “electric shocks,” and “prison sentence.”


Flares: Depending on the person, the word “flares” has different meanings. For some, it means frequency of pain. Others use “flares” to refer to additional symptoms like fatigue or a flare-up of a specific condition like interstitial cystitis or lupus.

Inspire solution: Gauging patient awareness through surveys and interviews

Researchers determined that many people with chronic pain identify as “spoonies” on online social media. The spoon metaphor references a blog post called “The Spoon Theory,” which equates the amount of energy available to someone with chronic pain to a “handful of spoons.”

Social media users with chronic pain use hashtags like #spoonie, #spoonielife, and #spoonieproblems to build community and raise awareness. 

Many people also use their online bios to self-identify as someone with chronic pain. Top themes include:

  • Disease or condition: Chronic pain, fibromyalgia, cancer
  • Interests or occupation: Animal, artist, writer
  • Social identity: Advocate, mom, family

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