Opinion: Fed Up with Pain? Advocate!

By Brooke Lee Keefer

Screaming into a vacuum about my pain and inadequate treatment wasn’t getting me or any other patient anywhere so I met with my Congressman’s district director, “Bob” this week.  It was a great meeting, one each and every pain patient should be scheduling in your home districts.  Since I am a US Pain Foundation pain ambassador, I spoke with them first to get tips on what to say to Bob.  The worst thing I could do was walk in there screaming and yelling about our broken pain management system.  Instead, I armed myself with knowledge, was assertive not aggressive, and felt my mission was accomplished after talking with Bob for an hour and a half.

Brooke Keefer

Brooke Lee Keefer

Before I shared my long painful health story, I asked Bob to think about the worst pain he ever felt.  He immediately said, “sciatica” with a grimacing expression.  I said, “Ok, now imagine you can’t get treatment for it and it never ever goes away.  It is 24/7 and lasts for months.”  After that, Bob clearly had no problem identifying with everything I shared about pain.  Everyone has experienced pain in their life and if they tell you they haven’t, they are lying.  The difference is they’ve most likely experienced acute pain or pain that lasted less than a week, not chronic.  That is where our personal stories are so important.

After I shared my health story, I shared about the lack of access I faced trying to get my pain managed, including the barrier to opioids and how nothing else worked for my chronic pancreatitis and how the only “cure” is to have my pancreas removed.  I explained that where we live not a single pain management doctor in a 50 mile radius prescribes opioids, though for my particular condition it is the most common and necessary treatment.  Trust me, there are loads of grumpy people in pain here in upstate New York.  I shared about how my body gave out from pain, my blood pressure doubled, and I began to have a stroke—from pain.  I told him the other side of the opioid story isn’t being told by the media—the chronic pain patient side.  I made it clear he knew I was a devoted mom, wife, daughter, sister, friend, a grandmother and human being.

Then I gave Bob a one-pager on the National Pain Strategy and reviewed it with him.  Bob was not aware there are 100 million people in pain in America.  He wasn’t aware of the National Pain Strategy either.  It is crucial if you meet with an elected official you have some knowledge about this report and advocate for policymakers to support its objectives. This report needs to be on the radar of all elected officials.  It is our blueprint for pain patient rights, research, and fair treatment.

What will become of my meeting with Bob?  He assured me he would contact the staff in D.C. and the Congressman.  Will that happen or anything come of it?  I can’t say, “definitely”.  Regardless, I exposed someone close to someone in power about the plight of chronic pain patients and need for a pain strategy.  My next stops are my federal and state senators.

Please make a commitment now to contact and meet with your representatives.  Here is how you can do it:

  1. Sign up as a US Pain Foundation pain ambassador at: https://www.uspainfoundation.org. Tell them you want to meet with your elected official(s) and would like guidance.  Alternatively, I’ll gladly help you out.  Email me at: info@sodae.org.
  2. Locate your federal elected officials. It is very easy.  Go to: https://www.opencongress.org/people/zipcodelookup and plug in your address and zip code. Call their office and tell them you would like a meeting with their district director or a top aide to discuss pain patient issues.  This website will give you the D.C. contact info but be sure to get an appointment in your home district.  Alternatively, you can use this site to locate your representatives then you could google their home district office.
  3. Be pleasant but authentic during your meeting. Do NOT go into an elected official’s office screaming and yelling that your pain medications were cut off.  Yes, that is a horrible thing but there is so much more these officials need to know.  All you have to do is tell your story from the beginning, including how and why you developed pain, how pain has affected you and your family, your experience with pain treatments and doctors, etc.  You know your story best so no need to get nervous.
  4. Be sure to hand them info on the National Pain Strategy. I brought two copies of the one-pager with me. I gave one to Bob and used my copy to read the bulletpoints.
  5. Dress nice. I wore a nice pair of jeans, short heeled mules, and a nice blouse with a flowy cardigan.  In other words, don’t wear sweatpants, which was hard for me as I live in sweatpants!
  6. Really want to spread the word? Locate your local state assemblyman and senators and meet with them too.  These are not federal level officials. They only serve your state.  If you have questions about finding them you can email me or the US Pain Foundation or try googling it.
  7. If you absolutely cannot get out of the house to advocate, write a letter or email. These methods are mostly ineffective but if we can get enough people to send letters, representatives will be forced to take note.  In-person meetings are still the best way to advocate and promote awareness.

I hope you will join me to start making a real change for pain patients! Thank you.

Brooke Editor’s Note: Brooke Lee Keefer is a mom to three sons ages 28, 19, and 4 and has a 2-year-old granddaughter. Brooke suffers from several painful conditions—sphincter of oddi dysfunction (a defect in the pancreatic/biliary valves), chronic pancreatitis, and fluoroquinolone toxicity syndrome (long term adverse reaction of the nervous system to Levaquin). Though these have disabled her, she writes health articles, advocates for patient rights, and runs the Sphincter of Oddi Dysfunction Awareness and Education Network website, www.sodae.org.

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