The journey of living with chronic pain - with its roadblocks, pitfalls, and detours—can be next to impossible to understand for those who aren’t walking its path.
By Rebecca McKinsey
But that understanding is vital for those who live with, care for, employ, and treat individuals living with chronic pain—to increase understanding, improve policies, and create more effective treatments.
The Centers for Medicare & Medicaid Services (CMS) sought to help bridge the gap with the creation of a “journey map,” an illustration that depicts various aspects of the chronic pain experience. The map is part of an effort on the part of CMS to learn more about barriers in access to care for individuals living with chronic pain.
“The CMS Journey Map of the chronic pain experience is really phenomenal,” says Cindy Steinberg, director of policy and advocacy for the U.S. Pain Foundation. “Hats off to the artists and team at CMS who created it. It is hugely impactful on first glance all the way down to almost all the details in capturing the experience of millions of Americans who live with chronic pain. I would suggest a few changes to make the image even more accurate. I would change the header ‘Complementary and Integrative Care’ to ‘Individualized Multidisciplinary Care’ and make complementary and integrative care another strand under interventional approaches, conveying that complementary care is another type of therapy that may be combined with others to help an individual better manage their pain.”
A visual representation of the pain journey
The journey map illustrates barriers to care experienced by individuals living with chronic pain, quality of life challenges, and the day-to-day wear and tear that chronic pain exacts on both patients and their loved ones.
The illustration follows the path of people with pain as they struggle through numerous barriers to care such as lack of insurance coverage, stigma, inability to find a provider who will treat them, and a punitive regulatory environment. As one individual traverses a tightrope while juggling work, day-to-day tasks, mental health, family and friends, financial burdens, and quality of life, logistical access problems and a dysfunctional patient-provider relationship cause the tightrope to fray.
The burden of their chronic pain condition and lack of support weighs the individual down as they try to scale tall, treacherous cliffs to reach treatment, while their loved ones feel at a loss to help. In some cases, as individuals with pain make it to the other side of the canyon and take care into their own hands, they are able to access complementary and integrative care. Even then, though, insurance may not cover all of the needed care, and some patients never make it to that point.
“The image of the ravine with figures trying to climb steep, rocky cliffs, and of a patient crossing it on a tightrope while juggling all the aspects of their lives and being weighed down by misguided policies, is one that will stay with me for a long time,” Steinberg shares.
The importance of increased awareness
CMS hopes to see greater awareness and understanding with the distribution of this tool: “We encourage everyone to explore where opportunities exist outside of the parameters of government to bring ease for those suffering with chronic pain, such as eliminating the stigmas that exist not only for those who suffer with chronic pain, but also those who suffer with behavioral health issues as well as those who suffer from opioid use disorder,” states information from cms.gov.
“The CMS Journey Map signals to anyone that looks at it, and especially to those living with chronic pain, that there are people at CMS who understand and care about how arduous and onerous their journey is to find help and want to do something to improve it,” Steinberg says. “My only wish is that more could be done to push this out into the world so that policymakers, health care providers, and the general public see it as well.”
To view the CMS journey map online, visit: