Why I went public about serious pain and opioids.

Seeing how difficult it is for people in pain to get treatment today with the heat turned up on the opioid epidemic inspired me to tell my own story about how a surgery left me unable to sit, stand or walk and in severe pain for many years.   Using opioids among other treatments for pain management, I was able to continue working as a high-level federal civil rights attorney.  I negotiated major settlements via video teleconference, won important cases in federal court arguing from a folding, reclining lawn chair, and supervised thousands of cases by hundreds of attorneys across the country from my bed.

It was hard for me to get up for the first time and talk about something so intimate and personal.  When I spoke at TEDx Boulder, it was also my first time standing upright after having my spine reconstructed with artificial disks and vertebral remodeling. But the audience was supportive and described the talk as "miraculous and inspiring."

Part of me didn't want to come out publicly as a voice of pain, an opioid user.  But my pain started in the 1990s, when treating pain was a priority and I had access to the best medical care.  I shudder to think what would've happened if my pain had begun today, when it is increasingly difficult for people to get pain medicine.  My talk pivots to discuss the under treatment of pain and reviews some of the social and legal dynamics in the current environment.  It will be up in a couple of days, and I look forward to posting it here.

 

 

11 thoughts on “Why I went public about serious pain and opioids.”

    1. It’s a complex issue with many permutations. My hope is that we can address it thoughtfully so that people in pain and people who suffer addiction from pain medication or otherwise receive the help they need.

  1. Incredible. Thank you for telling your story!  In under twelve minutes, you managed to counter all the major patient-oriented and public health arguments cited as reasons to restrict opioid therapy with statistics​ and your personal story.  Health professionals and the lay public who haven’t felt or seen the effects of chronic and intractable pain are easily swayed to support restrictions when they read about overdose deaths and hear claims from physicians that opioids are ineffective for chronic pain and harm patients regardless of whether they develop opioid use disorder.   The high volume of news stories and journal articles describing opioids as “heroin pills” and patients as manipulative and drug seeking cause their audience to discredit patients who report they are helped by chronic opioid therapy and wish to remain on their medication or return to their previous higher dose.

    You do an excellent job explaining how opioids improved your quality of life and enabled you to work while you continued searching for – and actually finding definitive  treatment.  Your personal account directly contradicts claims that patients on opioids become apathetic, withdrawn, and lose the desire to remain employed or return to their prior career or seek one suitable to their current limitations. The fact you were able to stop medication when pain improved but still​ support continued use for patients needing relief refutes claims that patients who stop opioids have less pain and are able to recognize the deleterious effects of opioids on their ability to function once their brain is no longer “hi-jacked by opioids”. Lastly, hearing you describe your recovery after 22 years of disabling pain gives hope to the thousands of patients still searching for help.

    1. Wow, Anne, thank you so much for your attention and thorough-going comment. I do so appreciate it! I hope to make a difference – at least to invite people to consider the other side of the opioid epidemic! Your warm, intelligent and supportive comment means a lot!

  2. We have lots to accomplish together, all of us working as a team to put the humane back into health care. So glad to hear your focused voice!

  3. Thank you Kate for lending your voice to the issue of opioid abuse. There is a problem that should not be ignored, but the response to date has done nothing to help pain patients who need the help opioids offer when nothing else works. The response to date has done little to help doctors who have little training or useful protocols in the administration of powerful medication over long periods of time. The response to date has done little to help addicts reaching for opioids. As someone living with Complex Regional Pain Syndrome (considered the most painful disease known in modern medicine), I’ve been overly cautious about using the prescriptions I’ve been given because of stigma, and fear of side effects. Pain has robbed me of my mobility, the joy of playing with my grandchildren, and the ability to serve my clients the way I used to. It has created tension in my marriage, isolated me socially, and caused me to develop depression and anxiety. But I refuse to live in my recliner. My voice will be heard, and I will continue to serve as much as I can. I will keep looking for interventions and treatments that will free me from the relentless, searing pain of this disease. And I will advocate for better physician training, better treatment of pain and addiction, and better protocols for the use of pain medication that doesn’t interfere with pain relief for those living with severe chronic pain.

    1. Thank you Lisa, for your comment. I am well aware of CPRPS. I am so sorry you are suffering. Do you know the organization, For Grace? The woman who runs it also has CPRPS, and is a wonderful advocate. They are CA-based. I very pleased–and intimately understand the limitations of which you speak. I am delighted to meet you and am glad that you are advocating for people in pain.

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