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No Longer Silent: Reflections

Reprinted with the kind permission of Lesli Hill, MS and the PAINS Project [1]
Note: PAINS-KC is a group of approximately 50 “Citizen/Leaders” who live with chronic pain or care for a family member who does. PAINS convened this group more than four years ago for the purpose of advising its management team about program development, publications, and grant applications. Members of PAINS-KC also participate in educational programs for healthcare professionals and those in training as well as the public. They interact with policy makers and the media on a regular basis. PAINS-KC is a PCORI contract award recipient and has consulted with scholars at the University of Texas (Southwest Medical School and UT-San Antonio), the University of Kansas, Texas A&M, the American Academy of Family Physicians, the University of Maryland and others. Citizen Leaders, PAINS’ staff and invited guests meet monthly for dinner and to advance a “cultural transformation in the way pain is perceived, judged and treated.” The following is a reflection written by one of our Citizen Leaders after the July meeting.
We are reluctant members of a club no one wants to be in, our lives threaded together by a cruel tailor. We officially gather each month as the PAINS-KC citizen leaders group. Unofficially, however, we are friends bound by common suffering. It is defined not by our anger at experiencing pain, but by our desire to leave a mark on how the world sees and hears us and how the medical community responds to our suffering. It is here, surrounded by others who are in pain, that we don’t have to justify why we hurt, where we hurt, or how much we hurt.
Our meeting last week seemed ordinary. We made our short introductions, then started through the agenda, which always includes updates on grant funded projects and significant government policies that have positive or negative impacts on those who live with pain. Then, in the middle of it all, we hit a transformational moment, something we could have missed had the leaders of this group insisted on marching through the agenda.
Someone made a familiar comment about the opioid addiction epidemic and how the new regulations had left him without satisfactory treatment options, carefully inserting the disclaimer that he only uses opioids when the pain is unbearable, when he needs to get out of bed at 8:00 a.m. instead of after noon. He has a life he wants to live. Getting out of bed is an essential part of that life. One member described the intense pain that just a windy day can bring on and how her husband will drive her to the front door of a store so that she will not experience that painful trigger. Then, she added that she would only use opioids when the pain was unbearable. We nodded with a profound understanding that only those with pain can comprehend.
As an organization, we collectively and consciously make the effort to separate the tragic message of the opioid addiction crisis from that of the message of people who live with pain. We clarify our mission at every meeting, a mission that focuses on advocating for changes in the way chronic pain is assessed and treated…But, since the two messages have become inextricably politically intertwined, the opioid elephant insists on barging into the room. Tonight, we began to take a bite out of it.
As I listened to my pain peers, I realized that not one person complained about having pain. No why me, woe is me. What emerged was a picture of people with chronic pain that discounted all the assumptions that society, including the medical community, makes about people in pain. You know what those assumptions are….people with pain are drug seekers, people with pain are difficult, people with pain are complainers, people with pain are victims, people with pain are needy.
It was in this place of trust where no one needs to apologize for doing what it takes to live a productive life that the authentic, unfiltered patient voice, the elusive patient in patient-centered pain care, found the words to speak with surety and strength. We have spent millions of dollars trying to quantify and categorize chronic pain. However, the voices of people who live with pain have been eerily silenced because pain doesn’t fit well into a database. It resists the simplicity of the pain scale; it certainly falls on deaf ears in the halls of government.
We hear the stories of drug addiction, how many have died, the increase of addiction across the country, the number of families touched by addiction. We are anguished by these statistics; we weep for all of those whose lives have been torn because of drug addiction.
Yet, we can also weep for those lives not lived well because of chronic pain. Recognizing the pain of drug addiction does not negate the cruelty of living with debilitating pain. It is time to quit pretending that it does. People who live with pain get it. We will be no longer silent. We have a clear voice. Will you hear it?

The Pain Action Alliance to Implement a National Strategy (PAINS) is a consortium of leaders working in professional societies, patient advocacy organizations, policy groups, consumers, payers and the private sector working together toward a common vision and mission. For more information, visit PAINSProject.org [2].