Can the Chronic Pain Community Unite Before It’s Too Late?
/By Peter Pischke, Guest Columnist
What’s the quiet thing often left unsaid in the chronic pain community? An inconvenient truth that some patients and advocates would rather ignore?
Ed Coghlan touched on it when he closed his nearly decade-old blog, the National Pain Report, with a warning.
“In covering the chronic pain community, in addition to meeting hundreds of really interesting people, it is also evident how the community’s fractious nature holds it back,” Coghlan wrote. “Rivalries, which from where I sit look rather petty, prevent a unified voice for truly addressing solutions in fixing a broken health care system that simply does not work for the chronically ill.”
The truth is the pain community is too often the source of hate and weaponized toxicity. Not just against anti-opiate crusaders, but against each other. It’s a self-inflicted problem that may be the most significant handicap to putting together a united front to convince society to end opioid prohibition.
How bad is the problem? To find out, I interviewed over a dozen patients and leaders in the pain community. Included in this group are medical and academic professionals, civil rights activists and patient advocates. Most requested anonymity.
All agreed that there is an enormous problem of toxic behavior plaguing the movement, in which certain advocates target each other with vitriol and purity tests. The stories shared with me include death threats, stalking, harassment, theft, heckling at conferences and plagiarism.
This toxicity, unfortunately, doesn't stop with them. Mirroring the broader political culture online and following the examples set by strident advocates, some patients engage in rumor mills, back-biting and social media mobbing.
The backbiting does not go unnoticed. For some lawmakers and healthcare providers, the pain community is a by-word for crazies, especially online.
“They see the inner fighting, they see what's going on,” says pain patient and activist Jonelle Elgaway. “They also see that we're not united in any way. They ask me, ‘I see the cancer community, and none of that happens in it, does it?’”
Unintended Consequences
Sadly, some prominent advocates are willing to use the vilest attacks against their perceived enemies. They are often sent scattershot, aimed not only at anti-opioid organizations like Physicians for Responsible Opioid Prescribing (PROP), but people who lost loved ones to addiction and pain sufferers deemed insufficiently dedicated to the cause.
As one prominent physician told us, the vitriol creates unintended consequences that only reinforce the stigma that "patients are crazed addicts" – which hurts our ability to persuade leaders in government and medicine that pain patients need help.
Many of those we talked with have been victims of this hate firsthand. Some have staked their personal and professional reputations defending patients, sacrificing careers, relationships, finances and even their family’s well-being to fight for patient rights. One person sold their house so they could continue doing advocacy work. Another burned almost all of their professional relationships to stand up for patients.
Often working quietly behind the scenes, in places like Congress and the CDC, they are the community's most effective warriors. The recent gains we’ve seen, such as the American Medical Association finally taking a strong stand against the CDC opioid guideline, would not have happened without them. Yet, for their sacrifice, the community has rewarded them with bile.
The toxicity is so intimidating that few we spoke to were willing to go on the record. Many are more afraid of the pain community than they are of the news media or organizations like PROP.
The problem also affects our ability to get prominent people to support our cause. Elgaway points out that anytime a celebrity opens up about having chronic pain, unless they meet a purity test for opioids, they are attacked. For example, when actress Kristen Chenowith joined in a marketing campaign for Belbuca, she became an instant target on social media
“Everybody on Twitter kind of jumped on her. She’s famous and she could have been somebody that maybe could have helped us. And I understand you don't agree with her supporting this drug, but you can't jump on everybody that's trying to do something,” Elgaway said. “You know people are going to be afraid of us. They’re going to go back and tell people that chronic pain community is crazy.”
This circular firing squad reinforces negative stereotypes about pain patients, and pushes advocates and potential allies away. It also creates deep fractures in the community, making its most effective leaders too afraid or unwilling to collaborate. Too often, advocates are more concerned with marking turf and tearing each other up, instead of engaging with decisive action that might create real change. How can a coalition grow if every newcomer is pushed away?
This kind of behavior is foolhardy. Some advocates act as if they are the dominant force on the cusp of winning. But the reality is that despite millions of patients losing access to effective pain care, most Americans are still unaware of the pain crisis. What they do know is the story of the opioid crisis. And the media, government and many medical institutions are still invested in that narrative.
Losing Focus
So why are patients and advocates doing this? I spoke to Dr. Terri Lewis to understand why the pain community can be so hostile, especially online. She told us the negativity reminds her of people “going through the stages of grief."
“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them,” Lewis said.
Another factor Lewis points out is that there’s a fundamental cultural clash between pain patients and medicine. The world of medicine and research is slow, while patients want immediate solutions. When you watch doctors, researchers and regulators at a medical conference, the slowness of the process can seem like an infuriating betrayal. As a friend told me, “To them this is just academic, but to us this is our lives.”
It is natural that pain patients feel angry at the world. They're often mistreated, denied medication and ostracized from society.
But just because we can understand why patients act badly doesn’t mean that behavior should be excused. Nor does it undo the substantial damage it does to the cause.
Dr. Forrest Tennant, a well-respected pain specialist who has sacrificed much for his patients, is concerned that some advocates have forgotten what’s most important.
“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them.”
“I'd call for people to try to respect the other person's views. Do the Golden Rule: Do unto others what you'd have them do unto you. I know it sounds simplistic or awfully silly. This is a no-brainer to treat other people kindly,” Tennant said. “We are trying to help people with some very serious diseases that are going to end up with short lives, and we've lost focus on who we are trying to help."
It isn’t easy to admit mistakes. Everyone makes them, including me. What matters is that we learn from them and try not to let our egos get in the way. Community heroes like Dr. Red Lawhern encourage reflection and repentance.
“Remember, you can be amazed how much can get done if you don't care who takes the credit," says Lawhern. "Begin with an attitude of humility and the sense that it's not about you.”
Barby Ingle of the International Pain Foundation likens the pain community to a jigsaw puzzle. Every piece is different and sometimes its hard to find where they fit, but to complete the puzzle you need every piece.
“If you want to be the biggest help for yourself and other patients, do what you can do to help those you can help and know that there will be some who don’t want help or believe another way is best. It doesn’t make them not part of the pain community,” Ingle says. “Find or create your niche and work to make a difference, fulfil your goals, and be the best you can be. Be good to yourself and be good to others --even if you disagree.”
If the pain community really wants change, every patient and advocate must self-evaluate and adjust their behavior. We must stop aiming our guns at each other and learn to agree to disagree.
At the end of the day, whatever our disagreements, if we can improve pain care and get meds back for patients, nothing else should matter. We must stop being the community that people fear, and become an inclusive community that welcomes people to join our cause.
Peter Pischke is a freelance journalist and host of the Happy Warrior Podcast. Peter is also a disability activist and chronic pain patient living with intractable pain due to chronic pancreatitis.
This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.
