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Overview, Concepts, and Framing of Chronic Pain and Disability

The workshop opened with a high-level overview of topics that served as background for the remainder of the workshop. The three speakers were Vincent Nibali, a technical expert in the Social Security Administration’s (SSA’s) Office of Medical Policy; Kim Dupree Jones, the Asa Griggs Chandler professor and associate dean for academic advancement at Emory University; and Jerome Bickenbach, permanent visiting professor at the University of Lucerne and professor emeritus at Queen’s University, Canada.

DISABILITY ADJUDICATION POLICY

Vincent Nibali summarized SSA’s disability adjudication process and how chronic pain can fit into that process. He explained that while SSA’s two disability-related programs are designed for distinct populations, the medical and vocational rules for the two programs are identical once SSA determines an individual meets the non medical eligibility requirements for either program. He noted that both programs are for individuals who are totally disabled, an admittedly high standard whose purpose is to ensure benefits for those with long-term, disabling conditions.

For the purposes of determining program eligibility, Congress has defined disability for an adult as “the inability to engage in any substantial gainful activity (SGA) because of a medically determinable physical or mental impairment(s) that can be expected to result in death or that has lasted or that can be expected to last for a continuous period of not less than 12 months.” SGA, said Nibali, is defined by a monetary amount. In

2025 SGA is considered earnings of $1,620 or more per month for most disabled people, or $2,700 per month for blind individuals.

For children, Congress has defined disability as “a medically determinable physical or mental impairment or combination of impairments that causes marked and severe functional limitations, and that can be expected to result in death or that has lasted or can be expected to last for a continuous period of not less than 12 months. An impairment(s) causes marked and severe functional limitations if it meets or medically equals the severity of a set of criteria for an impairment in the listings, or if it functionally equals the listings.” The listings of impairments are special rules that help SSA identify claims that clearly meet the definition of disability (see Box 2-1).

To determine if an adult meets the requirement to be unable to engage in SGA, SSA has a five-question, sequential evaluation that allows it to make a disability decision at the earliest possible step without prejudicing any claimants:

1. Is the individual engaged in SGA?
2. Is the impairment a medically determinable physical or mental impairment that is severe, and does it meet the duration requirement?
3. Does the individual’s medical condition meet or medically equal a listing, where listings are publicly available sets of criteria for specific impairments that SSA believes represent a higher level of limitation than the program requires in general?
4. Does the impairment prevent the individual from performing their past relevant work?
5. Does the individual have the ability to adjust to other work?

Nibali explained that step 3 is a “screen-in” step, meaning if an individual does not qualify for disability benefits at this step, they are not denied, and the assessment moves to step 4. If an impairment is severe but does not meet or medically equal any listing, SSA assesses in step 4 whether the applicant’s physical or mental residual functional capacity allows the person to perform past relevant work. Applicants who are able to perform past relevant work are denied benefits, while those who are unable to do so proceed to step 5. At step 5, SSA considers an applicant’s residual functional capacity along with vocational factors such as age, education, and work experience, including transferable skills, in determining whether the individual can perform other work. Applicants determined to be unable to adjust to performing other work are allowed benefits, while those determined able to adjust are denied.

For children, SSA follows the first two steps in the adult process, but at step 3, after considering whether an impairment meets or medically equals the requirements of a listing, SSA additionally relies on the concept of “functionally equaling the listings,”¹ which means that an impairment must result in marked limitations in two domains of functioning or an extreme limitation in one domain compared to children of the same age without impairments. The six domains of functioning are acquiring and using information, attending and completing tasks, interacting and relating with others, moving about and manipulating objects, caring for oneself, and health and physical well-being.

Given there is no objective test or laboratory value to quantify pain itself as a severe, medically determinable physical or mental impairment as required by step 2, Nibali said SSA considers the extent to which an individual’s symptoms, including pain, can be reasonably accepted as consistent with the objective medical evidence and other evidence, including the individual’s statements and information from both medical and nonmedical sources. The key, he said, is consistency across all information sources. SSA tells its adjudicators to recognize that some individuals experience symptoms and related functional limitations differently, even with the same impairment and even with the same or similar case evidence. “I think that is essential because it speaks to the individual nature of chronic pain and the fact that we are not going to be able to look at a number on a page and make a decision,” Nibali said.

CHRONIC PAIN TREATMENT

Kim Dupree Jones said research has shown that pain is not merely a symptom of injury or illness but is a disease entity that can become

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¹ CFR § 416.926a.

self-perpetuating. She noted it takes an average of two to three years and seeing three to four physicians before an individual receives a diagnosis of certain pain conditions. This delay may be associated with poorer outcomes, including worsening severity (Choy et al., 2010; Clauw et al., 2019; Moshrif et al., 2023; Salaffi et al., 2024).

Jones said one challenge leading to a delay in diagnosing and treating pain is that many painful conditions overlap, making it difficult for a primary care physician to decide who to refer the patient to for further evaluation and treatment (Figure 2-1; Maixner et al., 2016; Schirle et al., 2023; Schrepf et al., 2024). Pain is not a stand-alone problem but one that exists with other symptoms, which often results in functional impairment. Difficulty standing or sitting for any length of time can accompany pain, as can fatigue, non-refreshing sleep, stiffness, tenderness to touch, and poor balance and falls related to postural limitations (Jones et al., 2011).

Behavioral co-occurring symptoms can include depression, anxiety, and cognitive issues, including difficulty with short-term recall, sustained concentration, maintaining attention, and refocusing after distraction.

Symptoms can also flare after exertion (Barhorst et al., 2021). Jones, for example, has had patients repeatedly lift a 10-pound weight or go up and down stairs without trouble as part of a disability evaluation only to have a terrible delayed-onset symptom flare two or three days later. “I am not sure how we get around that, because they can generally rise to the occasion to do the task but then have an issue after that task is over,” she noted.

Sensitivity to bright light (Balba et al., 2022), loud noises, cold, and odors are important co-occurring symptoms, said Jones. This is particularly true for nociplastic pain states that arise because of changes in how the nervous system processes pain signals and are associated with fibromyalgia, chronic low back pain, and irritable bowel syndrome. This has implications for how employers can make accommodations to keep people in the workplace.

Jones noted that pain diagnosis and treatment may be different in children and adolescents. It is important, she added, for children and adolescents not to fall through the cracks when they transition from pediatric to adult care.

Jones said there are opportunities to improve pain education for nurses and other health care providers to address the fact that the incidence of chronic pain is too high to be managed only in specialty care or pain clinics. “There is evidence that faculty do not really understand the relationship between acute pain moving to chronic pain and regional pain moving to widespread pain,” said Jones (Firestone et al., 2025). It is important, too, she added, to listen to people with lived experience of chronic pain (Friend et al., 2021).

THE SOCIAL EVOLUTION OF CHRONIC PAIN

Jerome Bickenbach noted there are social policies, such as the benefits associated with Social Security disability determination, workers’ compensation, and veteran status, that influence the social response to people who experience pain. Increasingly, these policies encourage people to maintain their employment and companies to introduce accommodations to keep people employed. Unlike the United States, however, most countries do not require the person to be totally unable to work in order to receive disability benefits.

Bickenbach said the driver of shifts in social conceptions of chronic pain is the unavoidable fact that pain is subjective. This subjective nature, in the context of disability determination, can raise suspicion of fraud and

deception in self-reports of pain. He noted the conflation of impairment and disability or disease is at the center of the rules and regulations pertaining to disability determination. He pointed out that even if social policy recognized pain as a disability or as a disease, as opposed to a symptom of a disease or an impairment, practical issues would remain regarding the evidence of pain, the political acceptability of trusting self-report, and levels of individual sensitivity or cultural differences that may unfairly distort an assessment of pain severity and an individual’s need for support.