WHEN PAIN IS THE DISEASE: MOVING PAST OUTDATED MODELS TO CREATE GREATER UNDERSTANDING OF PAIN
By Calli Barker Schmidt
Sean Mackey, MD, PhD, has seen a lot of people with pain. He knows that many of them feel marginalized, ignored, and untreated.
As people living with chronic pain know so well, the condition can manifest itself on a wide spectrum, “everybody from those who are getting by, doing their day-to-day activities, all the way to those who are bed-bound and unable to deal with it,” says Mackey, chief of the Division of Stanford Pain Medicine in Palo Alto, California.
The same spectrum is true for people living with, for instance, diabetes—they can experience moderate glucose intolerance, all the way to amputations and kidney dialysis. But while diabetes is recognized as a distinct disease, chronic pain typically hasn’t been. And that lack of recognition has steep consequences for those living with pain.
Historically, chronic pain has been “siloed” into categories according to what causes it: Migraine disease is different from back pain, which is different from fibromyalgia. “We have these segmented buckets and these silos of conditions, yet we realize more and more that there are commonalities of these conditions,” Mackey says.
An outdated understanding of pain
Many professionals remain stuck in what Mackey and Anjana Kundu, MD, anesthesiologist-in-chief at University of Rochester’s Golisano Children’s Hospital and a board-certified pediatric anesthesiologist, pediatric pain, and palliative care physician, both identify as a Cartesian understanding of pain. The model is based on the work four centuries ago of philosopher Rene Descartes, who believed there was a direct link between injury and pain.
“[Descartes’ model of pain] is perpetuated in our beliefs and medical systems who believe that if you can’t find the source of your pain, it’s all in your head,” Mackey says. It’s a problem especially seen in women living with chronic pain: “They are not validated, and they are unbelieved.”
In a series of podcasts for Proactive Pain Solutions, a health care education and consulting company that seeks to improve the care of children who live with pain, Kundu, the company’s president, reiterates the danger of viewing pain only as a symptom of something else, rather than a disease itself.
“When we don’t find [an explainable cause], we either dismiss the patient’s complaints, or we feel at a loss to explain why our patient is still experiencing this pain,” she says.
The unfortunate result, Kundu notes, is that often individuals are considered attention-seeking or medication-seeking when they present with pain that doesn’t have a clear root.
“Not all pain is created equal, so why should we be using a single lens to examine it?” she says.
Models for pain treatment
Mackey’s team is working to build precision models for treatment based on patient input, brain imaging, bloodwork, and other tools. “We can now point to these brain images and show people that: The pain is not in your head, it’s in your brain,” he says. “It’s a real phenomenon and neurologic condition, and that has helped with validating the patient’s complaints and needs.”
These models help construct a course of therapy that can be replicated for others with similar types of pain. But the process is not as straightforward for pain as it is for some other diseases. “If you have the gene for breast cancer, we know what to do,” Mackey explains. “We need to get to the same place with pain.”
For this work to go forward, Mackey says it’s important to make sure that medical professionals are trained in this new, non-Cartesian understanding of pain, and to advocate with policymakers so they have a better understanding of pain as a disease in itself.
He shares, “It’s not universal, and we have a long way to go, but over the past 20 or more years, I have seen a greater acceptance of thinking of pain as a disease in its own right.”
In her podcast, Kundu expresses a similar sentiment. “Without understanding the nature of pain, trying to address pain is like throwing spaghetti at the wall and seeing if anything sticks,” she says. “You may get lucky with the spaghetti, or you may just dirty the wall a little bit.”
That understanding, says Kundu, can help in advocating for policymakers and insurance companies to normalize targeting pain as the disease and coming up with the appropriate treatments: “All that will help in ensuring better health outcomes.”
Gaps in understanding of acute vs. chronic pain
One factor that contributes to the larger misunderstanding of chronic pain as a disease is that there is a greater societal familiarity with acute pain, which typically occurs as the result of a concrete event such as an injury or medical procedure.
“This pain typically resolves with a resolution of that source of injury or insult, when enough time is given to heal it,” Kundu says. By contrast, “Chronic pain exists despite the resolution of the injury. So the evidence of that insult and injury is gone. “
Trying to address this phenomenon, Mackey has three goals: to define the factors that cause acute pain to become chronic, discover and implement novel methods to prevent the persistence or chronification of pain, and discover and test novel therapeutics to alleviate chronic pain.
“We have at this point probably 200 medicines and 200 procedures we use for pain and scores of mind-body therapies for pain,” running the gamut from meditation to desensitization work, he says. “The thing is, there is no magic bullet. There is no one single therapy that is curative, so there is a rather laborious process to find what works for a particular person. Everybody’s pain is unique to themselves, so frequently you have to tailor the therapies to the individual person and condition and context to help them.”