Pain Protestors: 5 Simple Ways to Stand Up

By Pat Akerberg, Columnist

It frustrates me that there’s such a huge gap between what I’d like to do and what I can actually do to protest how pain care has gone amok. 

The truth is I can’t talk without triggering unmerciful pain.  I can’t make lots of phone calls or present to audiences or groups anymore.  I can’t march, run or walk for any distance now.  Thanks to debilitating chronic pain, I can’t reliably commit my energies to much more than the daily challenges I face. 

Maybe you’re in the same place too? 

As discouraged underdogs, we want to change the lopsided fervor that’s trumping our critical need for safe and humane advancements in pain care.

I wish we could lead the charge, but in reality our compromised bodies often can’t keep up with what that requires. Starting from scratch is tempting, but that’s at cross-purposes with our limited capacities.    

Then I remember “the butterfly effect,” born out of physics and chaos theory.  It refers to a cumulatively large effect that a very small force may produce in a larger system over a period of time.  It postulates how the fluttering of a butterfly's wings in one part of the world may set off currents that will grow into a hurricane in another part of it.

We can’t predict or know when there will be enough pressure, conspiring events or cumulative conditions to bring about the butterfly effect for us.  But progress requires active involvement.

We have strength in numbers, but some patient advocates have called out pain sufferers, questioning where our support and voices of protest have been thus far.  That’s a fairly untapped opportunity.

If we want pain reform, it will take a critical mass of us calling for it.  Pragmatically, we can help build momentum and heighten the pressure for change quicker by supporting and working with current pain advocacy groups.

We have literally dozens of advocacy organizations, but ironically they lack organization.  Each represents a piece of the broader issue -- yet their efforts haven’t coalesced enough around a single goal or goals to gain substantial traction.

If you’re wondering what part you can play or where to put your limited energies, let’s look at some current opportunities.

Step #1

The oldest patient advocacy group, the American Chronic Pain Association, had a seat on a CDC advisory committee when the opioid prescribing guidelines were created.  But somehow that opportunity for active influence was reduced to a complicit check the box activity.

What can we do to call for better representation from such pain advocacy groups?  The well articulated comments that we write among ourselves could be leveraged to that end.  Copy, paste and send them to all national pain advocacy groups, starting with ACPA. Many of these organizations and their e-mail addresses are available by clicking here.  

Get involved.  Raise your concerns.  Urge all of their leaders to rally behind one unifying message for impact.  Ask them to recruit a spokesperson to give pain a face/voice (celebrity, athlete, or public/professional figure), devise ramped-up media and funding strategies, and enlist savvy lobbyists and lawyers.

If each of us would send out 5 letters, e-mails, or make 5 phone calls a week to a different advocacy group each week, we’d reach them all in just 8 weeks. 

Step #2

Have you heard of the LifeBOAT Act? Its legislation that would tax opioid pain medications, introduced by Sen. Joe Manchin (D) of West Virginia, and co-sponsored by Democratic Senators Amy Klobuchar of Minnesota, Jeanne Shaheen of New Hampshire, Heidi Heitkamp of North Dakota, and Tammy Baldwin of Wisconsin, along with one independent, Angus King of Maine.

The legislation is a reverse Robin Hood version of robbery.  Lacking conscience, the LifeBOAT Act would take money from pain patients by punishing them for their medical misfortune.  In turn, an estimated $2 billion of our tax dollars would be given to favored addiction treatment centers to treat opioid addicts.

If you feel strongly about the injustice of this tax, email or call the senators’ offices with your reasoned, opposing comments:

Step #3

The American Medical Association (AMA) recently decided to pass the hot potato by voting in favor of efforts to remove pain as a vital sign in professional medical standards, as well as disconnecting patient satisfaction scores from questions involving pain care in hospitals.

If this setback for pain sufferers pushes your buttons, you can call the AMA at (800) 621-8335 and let them know how you fell.

Step #4

September is National Pain Month, a good time to contact your local media and get them to cover our side of the pain story.  Press kits are readily available from some advocacy groups for this purpose.

Step #5

Our small efforts can quicken the overall cumulative effect, while giving us a personal and purposeful outlet.  A few more examples include:

  • Join advocacy and social media groups (like Facebook) to understand their missions and volunteer for their initiatives
  • Urge advocacy groups to get more media coverage of our side of the pain/opioid story
  • Endorsing petitions sent out on our behalf
  • Spreading the word and soliciting the help of family and friends

The Scottish writer W. H. Murray wrote this about the power of commitment: 

“Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation) there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred.”

By making a personal commitment on some level, each of us can contribute in ways that our physical limitations will allow. 

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.