Editor Xan Nowakowski, whose own experiences with a painful chronic disease have inspired much of their own research, reflects on seven years of scholarship on clinical pain management, and what they have learned from lived experience along the way.

When I started doing pain management research as a graduate student at Rutgers in 2008, it was an exciting time for the field. New technologies as well as off-label uses of less recent ones like the Interstim device seemed to hold tremendous promise, and intrathecal pumps and ambulatory catheters were achieving significant penetrance among a variety of service populations. Especially in the world of post-surgical pain management, new reasons to envision a bright future were cropping up all the time.

In the long-term pain management field, pharmaceutical companies were racing to develop drugs to address underlying causes of chronic pain. At the time, I was taking one of those drugs—Elmiron, the much-lauded “wonder drug” for management of interstitial cystitis. Those of us with chronic conditions dared to hope a bit too, even as we rode the capricious waves of hope and despair that living with persistent illness always seems to bring.

The summer of 2009 was a watershed time for me. I was completing my Master of Public Health fieldwork, preparing to finish the program, and thinking about my next moves. Though I did not know it at the time, within six months of completing my research I would make the life-changing decision to move to Florida. I would leave behind the place where chronic pain had brought me to the brink of suicide, and where I had learned firsthand why pain and post-traumatic stress so often go hand in hand.

I drove all around New Jersey that summer, interviewing hospital providers and administrators about the pain management modalities they provided, and the barriers they encountered in offering alternatives to opioid narcotics. One of the most instructive aspects of my own experience with chronic pain had been the Scylla and Charybdis choice I faced for over a decade, trying to reconcile my fears of opioid dependency and functional disability with my equally pervasive fears of ultimately losing my will to continue living with intractable agony. I would later learn that I was hardly alone in these fears.

The hospital personnel I interviewed were many, representing about 35 percent of all hospitals in New Jersey. They held a variety of advanced degrees and came from a variety of backgrounds, with differences in beliefs and practices that reflected the variations in their training. But what stood out most to me was the levels and awareness and compassion I consistently observed in the people I interviewed. Every single person I talked to viewed chronic pain as a serious problem worthy of serious clinical attention.

Likewise, each and every one of them reported feeling frustrated with insurance companies’ lack of willingness to pay for non-opioid treatment modalities. According to my study participants, this was the most prominent barrier to providing what they viewed as truly effective and responsive pain management in accordance with national guidelines. We shared those frustrations—I told my story to many of those providers after we wrapped up our interviews, and learned a lot of things “off the record” that have informed much of the work I have done since.

The people I interviewed shared my frustrations over care practices not being able to keep pace with scientific innovations as a result of funding barriers. Predictably, these problems were often worst in hospitals with a high charity care population. Some of these hospitals found creative solutions for their patients with chronic pain from conditions like sickle cell anemia by working with local Federally Qualified Health Centers. But as often happens in low-resource communities, need for these services greatly exceeded clinics’ capacity to provide them.

We still had plenty of reasons to hope, though. With so many new medications and technologies hitting the market and starting to permeate best practice recommendations for clinical care, there was ample justification for thinking about a pipeline effect in which impactful innovations would reach more and more health care users with each passing year, becoming more affordable in the process. The promise of affordable health care legislation from the Obama administration gave additional weight to this vision.

The summer of 2015 is now drawing to a close, and once again I am wrapping up a study on clinical pain management. This time I had a partner in research and less driving to do, and a ready team of MPH students and undergraduate research assistants eager to assist. We conducted semi-structured interviews with university health care providers, working excitedly to fill a gaping hole in the published literature on pain management. We had a wonderful experience getting to know one another and completing our study, and I loved every moment of watching my students shine as they enhanced their key informant interviewing and qualitative content analysis skills.

Yet as we finish coding our data and begin writing up our findings, my happiness has become increasingly bittersweet. My students’ achievements mean everything to me, and always will. Their thoroughness, however, has proven to be a double-edged sword. What my students unearthed in their probing of our study participants was an old familiar tale that rang all too true: lots of good options offered up by science, but no functional translation of these modalities into affordable clinical care for people with chronic pain.

It is 2015, and I still have to carry a bottle of opioid medication everywhere I go. This mostly achieves the purpose of quelling the crippling fear of not being able to control my pain if nothing else works. Indeed, the literature suggests that often the most helpful aspect of opioid medications is their ability to confer a sense of mastery to people who live with painful conditions. I feel this restoration of personal agency quite a bit when sitting in relative comfort as I am now, typing away on an article or blog post that makes me feel like my own experiences are gifts that yield professional insight.

I do not feel it as much during those times every few weeks when I lie curled up beneath my desk, praying into empty air that my medication will kick in. I do not feel it when phenazopyridine stains the edges of the toilet bowl, or when bleach fumes rise into my nostrils as I wipe away the evidence of how far we haven’t come in providing real options for people like me.   I especially do not feel it when the phenazopyridine fails to enhance the effect of the diphenhydramine I have already taken, and I have to reach for the bottle of narcotic tablets that I still associate with defeat.

I also do not feel any mastery when I remember why I stopped taking Elmiron—the surreal moment of standing in my parents’ kitchen holding an absurdly dainty gingham-topped jam jar of my own urine, staring in suspicion at the rubbery threads of unidentifiable discharge that had started appearing with alarming frequency. I had a moment where I realized that urinating through a tea strainer to catch “specimens” was about my limit. One is perceived as deviant enough when one lives with a mysterious autoimmune disease, even without making a habit of urinating in jars to inspect the contents.

I should interject that these shortcomings in the field are not entirely the fault of insurance companies. As the Affordable Care Act was being developed and organizations like the Institute of Medicine were continuing to refine their recommendations for best practices in clinical pain control, a storm was brewing that set the field of innovative chronic pain management back substantially. The retraction of some two dozen published studies on multimodal analgesia crippled other clinicians’ efforts to incorporate integrative approaches using new therapies into their own programs of care. As predicted, the field has yet to recover fully.

Of course, when you live with a painful chronic disease, you learn quickly that you never truly recover. Your body changes; your life changes; and your brain changes right along with them. Illness management becomes the name of the game—one that often feels like Whac-a-Mole rather than a game in which one defeats a series of bosses and wins. Good science, conducted by people with curious minds and compassionate hearts, is one of the best weapons we have in this game. But abuses of research ethics—even by scientists who may have the best of intentions in mind—can leave us fighting fisticuffs against enemies we cannot hope to vanquish on our own.

Later this fall, I will be doing a follow-up post here about the 2009 multimodal analgesia scandal and its broader implications for ethics in medical research, adding a perspective of lived experience to the insights offered by other clinicians as they reacted to the news about Dr. Scott Reuben’s research fabrications. In the meantime, I know that when many of you Write Where It Hurts, you are doing so in the most concrete and literal sense possible! So I encourage all of our readers to share stories and insights about pain management, including any research you have done on the topic and any lived experiences that inform your work.