Why I Went Public About Serious Pain and Opioids

Why I Went Public About Serious Pain and Opioids

By Kate Nicholson.

I recently gave a talk at TEDxBoulder what we lose when we undertreat pain. I began by telling 2200 intimate listeners how a surgical error left me in severe pain, unable to sit or stand and largely bedridden for almost twenty years. 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 story. My pain began in the 1990s, when treating pain was a priority, and appropriate pain treatment allowed me to continue working as a high-level federal civil rights prosecutor despite my physical limitations. You can see my talk, which pivots from my personal story to examine some of the social and legal issues around pain and opioids, at https://www.youtube.com/watch?v=u4vHSLeTe-s.

Kate Nicholson

My story of pain began twenty-three years ago.  I was working at my desk in the Civil Rights Division of the Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain. Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of thirty, just a couple of years out of law school at Harvard, I could barely stand. Sitting was impossible. Reclining became my dominant posture. For a while, I commuted, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. But for many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the Americans with Disabilities Act, a civil rights law that protects the rights of individuals with everything from MS to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My doctors tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations, to a surgery to separate nerves from adhesions, but nothing restored my mobility or diminished the pain.  When my physicians approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture, drugged up and written off. I worried about addiction and stigma.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate.

As soon as I took opioids, I improved.  I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again. Opioids did not heal me, but they allowed me to be as active and engaged as possible under the circumstances.

On the right dose of pain medicine, I pursued my job with vigor. I won important arguments in Federal court from a folding, reclined lawn chair.  Using video teleconferencing, I negotiated with the San Francisco 49ers and the Giants and the Walt Disney Company while reclined. I drafted the current regulations under the ADA, coordinated with the White House and supervised thousands of cases by hundreds of attorneys across the country from a screen and well-camouflaged bed.

Although it took considerable time with integrative treatment, I eventually recovered from a condition that I was told would only ever worsen.  And when the pain finally improved, I stopped taking opioids. I never developed tolerance requiring more medication for the same pain-relieving result. I experienced no difficulty in going off of opioids, although I did have to taper and go slowly to avoid side effects.

I understand that opioids are complicated.  People are different; opioid-induced analgesia exists. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse. I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

Kate Nicholson served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court.  She is currently writing a book about her personal experiences with severe chronic pain.  Kate is also an arts writer and enthusiast who helped found the new non-profit, Tilt West, www.tiltwest.org, recently named by Westword as the “best think tank for arts and culture” in the area.  Kate was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Kate Nicholson

There are 33 comments for this article
  1. Lauri at 9:05 pm

    I am a CPP and belong to many chronic pain and arachnoiditis support groups, all trying to make ourselves heard above the shouting of the Opioid Panic. A consistent comment I see is that people taking this obvious discrimination to the ACLU and ADA, only to be told that “they don’t bother with that.” What has to happen in order for us to be “bothered with,” for us to be counted as something more than second-class citizens?

  2. Jill at 10:49 am

    Melissa I am so sorry for your painful history. My heart goes out to you. But your frustrations with chonic pain pts is misdirected. Our issues are different from yours and trust me your life wouldn’t be better if you traded places with any of us. We also suffer emotional pain along with the physical. I hope you are able to find the strength to get help and get better. Everyone on this blog would be cheering for you!

  3. Dave at 9:26 pm

    Thank you for your story
    Though I live in Canada the same thing is happening here I went to see my family physician who writes most of the prescriptions told him things were getting worse progressively basically as expected and his answer was “well we need to get you off the opioids completely soon so we can’t go changing that.”
    I am 37 now been through this for 8 years so far with the medication I function well almost normal. I miss a dose or run out and forget to refill it’s a total disaster. I don’t get any withdrawal symptoms no headaches or anything that goes with that. Just pain severe uncontrollable pain mind you the opioids don’t get rid of this pain just makes it tolerable. With learning how to change the way I do things and the way I think about things I’ve been able to change my life and take it back. I go to college now to help find a new job.
    But I worry what the effect of this may have on me and then what do I do. I see my specialist soon. What if it’s the same. We must all stand and fight for our lives. Like Kate make our voices heard.
    Thank you for your story and everyone else.
    Good luck

  4. Kate Nicholson at 3:40 am

    Thank you, everyone, for your stories and comments. Melissa, I want you to know that I hear what you’ve said as well. As an ADA lawyer, I don’t believe that people deeply effected by opioids on either side of the equation — people in severe physical pain or people in severe emotional pain, including those with substance use issues–are being well addressed. I spoke about pain partly because it is my experience and partly because it is the under-heard voice in the current environment. But I agree with you that addiction is stigmatized, and that we need to address the full picture of pain.

  5. Melissa at 9:49 am

    I don’t judge people who claim to need opioids to treat their pain from various physical problems, because I am not in their shoes. It’s too bad that those same people (in chronic physical pain) choose to judge my emotinal pain, which stems from years of physical, emotional and sexual abuse from the age of three years old. How dare us morally-bankrupt addicts compare our disgusting selves to you people, who have “real pain?!” How dare we?! Emotional pain is obviously NOTHING compared to REAL pain, isn’t that what you’re saying? I don’t deserve relief, because I’m just a piece of garbage drug addict, right? I’ll tell you what…I will trade places with any of you. Right here, right now. I am always so devastated to see people show so little compassion towards people like me. There is barely a post made that doesn’t make sure to blame addicts, or vilify them as somehow different than “legitimate pain sufferers.” Walk a mile and maybe you’ll find some compassion, because trust me, no one is as condemned as much as a drug addict. And by the way? How do people who live outside of the US cope with pain, because America uses virtually all of the opioids prescribed. Just something to consider.

  6. Necia Saltmarsh at 1:51 pm

    I am in this boat with all of you. I have progressive MS, severe Fibro, and narcolepsy, to name a few. I have experienced treatment that people wouldn’t give a dog. Abused in every way imaginable. I recently wrote a letter to the editor, and was called by a reporter. My story will run soon. I just couldn’t die without at least trying to make a difference. Class action is not the way to go. The lawyers will make millions, and we will get a check for 34 cents.

  7. Amy at 4:07 am

    I WILL JOIN ANY MOVEMENT TO STOP ALL THIS AGAINST US. I ALSO AGREE THAT YOUR BACKGROUND COULD HELP US IMMENSELY. PLEASE STRONGLY CONSIDER STARTING A MOVEMENT

  8. Cris Rogers at 5:47 am

    Kate, thank you for your article. One truth I’ve learned in my CPP journey is the language and storytelling aspect is critical to being accepted as an earnest advocate. At times, I made my situation worse through expressing my angst and inward panic to a provider.
    A dispassionate, compelling story is the most important element to correcting this misconception. I am dependent on medications; not addicted. I routinely miss my scheduled meds, much to my chagrin. I’m able to function in a compelling way strictly due to these ‘masking’ medications.
    Until the medical community identifies causes treatments for pain that can avoid the opiate therapy, it’s all we have. We can support our positions with positive adjustments to our storytelling; sharing our story in ways our providers can advocate for and our legislators/regulators cannot ignore..

  9. Maureen Mollico at 8:16 am

    Kate, you are a remarkable woman! You have immense drive!
    I too have difficulty sitting/standing at all times, plus I cannot lie on my back for long lengths of time.
    I watched your TEDx talk. Excellent! Im sure you only have a given amount of time to speak but I too am wondering how you got better after all those years?!
    I am forever proud of you for standing up for yourself and our CP community re: meds.
    Thank you for that. I noticed many faces in the audience intently listening to you. Some even with their jaws dropped! I truly hope your story and relation to Opioid Treatment did not fall on deaf ears. Keep up the great work that you do!! With Gratitude, Maureen

  10. Teresa Haney at 10:22 pm

    I’d be willing to join a class action lawsuit. I have arachnoiditis. I live in constant pain every day. My meds have been reduced by 75% over the last year. I can’t take any more reductions. It took a long time to accept that I am disabled and will be on pain meds for life. Now they are taking the only thing away that keeps me alive. It makes me sick every time I hear these so called pain specialist say we dont need pain meds. I’m sorry but I want them to feel what I feel. I dont know what else will shut them up.

  11. Teresa Haney at 9:57 pm

    There are so many of us. How can they just take our lives from us? I have arachnoiditis I depend on opiods to survive the pain. My dose has been reduced by 75% this past year. If they take my pain meds away they may as well put a gun to my head. Why is it ok for “them” to decide our lives don’t matter? Whose going to take care of my grandchildren when I can’t get up to do it? I don’t get how people with average intelligence can’t see through this farce they call the war on drugs. How in the world are we going to survive this. This is a straight out attack on a group of people who have to fight each day just to survive.

  12. lacY at 4:11 pm

    are they dropping pepole in provo utah im very sick i have been un and ouy of the hospitlfor 13 years now but i fouund drs to help me and they did but now they said there hands are tied there takin painmeds away same with you mental meds is anyone haveing thesam problems

  13. cynthia at 2:06 pm

    As a person who is not able to sit, stand, or walk more than a few minutes at a time, i would be very interested how you recovered…what things did you do, besides the opiates. thanks

  14. Heidi schlossberg at 10:04 pm

    I can only say again: The only thing that will stop this is : Changing the Manufactured consent of the public with our own professionally created campaign to fight back PRO ACTIVELY and a massive public non violent but direct Action campaign. When enough NON severe CPPs and well as ALL Acute pain patients who are crucial to include, as well as their friends and family and professionals march in the millions on the street will this Cultish Witch hunt end. Not until then. And we must prosecute ALL the players in this manufactured genocide or it will occur again. Its not over when we get our pain medication back.

  15. Susan Jackson at 5:36 pm

    Kate, your story is all too familiar. I am a CPA who has recently had to go on disability because of EDS, POTS & a host of spinal issues. I’m a 44 year old mother, as well. I’ve had 25 surgeries in 15 years, all while working from hospital beds & couches. I have recently been DENIED my oxycodone because apparently “no one is shipping the drug to Florida”-?!?! How can this possibly be? My pharmacist says that he doesn’t even have the option of ordering it anymore. How is this legal – to just simply stop shipping imperative medicine, that must be taken every day to ward off serious side effects, to a patient who takes it daily??? Is this now a case against the drug manufacturer? Whatever you need from me, I am READY & willing to fight. I’m the founder of the South Florida EDS group, so you have backing in whatever you need from us. Please help us get adequate care & not be treated as second class citizens, unworthy of pain relief. I’m afraid that one day, I’m just going to give up when it gets too overwhelming. ..

  16. Cheri Furr at 3:26 pm

    Thank you for telling your story. My pain also started after surgery 17 years ago. I was diagnosed with CRPS. I also had to recline to even halfway be comfortable. Every treatment possible was tried, but I was finally prescribed 150 mcq of fentanyl patches that I used for 16 years with no side effects more successful than oxycodone because the medication was time-released 24/7 and was more steady. I never increased the amount and went to the same doctor and used the same pharmacy for 17 years. I had some oxycodone to use during really bad days, but I rarely asked for a refill. My doctor told me she could tell I was not a drug seeker. Like you, I never felt euphoria in the least. The fentanyl just kept the pain down from a feeling of being stabbed with Samurai swords down to a duller pain. Now that same pharmacy tells me they will only give me 7 days worth of painkillers. That same neurologist told me she will no longer “manage pain,” but will only treat MS and migraine patients. So what is a sufferer of chronic pain supposed to do, other than curl up in a fetal position? The FDA and CDC cannot treat all people prescribed opioids the same. I resent being lumped in with those who have overdosed because of their addictive personalities, their stealing drugs out of the medicine cabinets of parents or friends, those buying powdered fentanyl off the street that is of God knows what strength or cut with God knows what, or even worse, those overdosing on heroin bought off the streets. Many people drink alcohol, but a small percentage become an addicted alcoholic. Something has to be done for us, or chronic pain patients will start commiting suicide at a record rate.

  17. Kim at 12:24 pm

    Thanks for telling your story. More people need to come forward. Alot of people feel if u take opioids for medical reasons u will b come an addict, which is untrue. People can drink every weekend & not have people saying u need AA. The public needs to realize opioids r no different & r a miracle for people with chronic pain. Thanks.

  18. Linda at 11:57 am

    Hi Kate, you are an amazing and unique woman and I thank you from the depths of my heart for all that you do, and all that you endure AND, share with us.

    As I do not know how to start my new post here, I think you and the people here reading your story is a good place for me to share something I saw. Last night I saw Andrew Kolodny on the national Geo channel on a new episode of “Explorer XL”.
    I was stunned that he was being interviewed as THE expert on the world’s, yes the WORLD’S opiod prescription abuse problem. At no point was it ever disclosed his credentials. The Nat Geo reporter passed him as the end all be all. The sad thing was, was that he toured an overseas hospital for the dying, and there is no pain medication there. They showed the actual suffering. It is just horrific what is going on.

    The purpose for Kolodny, he is UPSET! UPSET that the drug companies MIGHT BEGIN TO START SELLING AND SHIPPING OPIODS TO THE DYING!

    Kolodny is afraid he says, that another country will become addicted like the United States!

    I had no idea how far reaching this Andrew Kolodny has been able to get to.

    And he’s young too! Way too young to obviously have wisdom and experience that only PAIN AND TIME bring.

    Thank you for allowing me to share this. Please share the Nat Geo info or feel free to anything here I wrote.

  19. Cary Cassell at 11:25 am

    Thank you Kate. Your story sounds so familiar as I too was a high functioning government employee while I was on opioid analgesics after exhausting all other options for a crippling disease which eventually lead me to early retirement and disability. I was told by my state government there is no way I was disabled because of my supervisors performance evaluations comments consistently rated my performance so highly. I didn’t have the energy left to appeal or fight the decision as I had just recovered from surgery and had several more scheduled.
    Over the last few years the effective drug therapy which enabled me to attain early retirement and have some degree of function have been taken from me.Although I still face more surgery I am ready to fight now , I desperately want the effective treatment and the degree of functionality back which I had before the opioid “hysteria”. I have recently had a trusted physician tell me I am being discriminated against because of my disease and disability.
    I have just finished writing a grievance to the state medical board for being forced to undergo epidural procedures in order to obtain a fraction of the opoids I recieved prior to my states implementation of the “pill mill bill”.
    I have no idea how it will play out but I have been backed into a corner and literally poked to the point I have been injured . Now am wounded even more than before and I am prepared to fight till my death. I resent having to expend the emotional and physical energy needed to do this but feel like my life literally depends on it.
    Once again I ask on a national level for some attorney to take up the cause and help me fight for my right to be treated as I was before the cdc guidelines and various state legislation interfered with my doctor patient relationship. Sincerely Cary Cassell Bedford Ky.

  20. Bruce at 11:06 am

    It would be nice if there was some sort of class action suit filed showing intractable harm to a group of people negatively impacted by the terrorist tactics used by the govt to suppress our rights as long suffering patients. Otherwise, your post just sounds like a self-aggrandizement and name-dropping exercise. Maybe you can help the little people without an Ivy League pedigree. Since you are no longer affected by the decimation caused by constant, severe pain. Thank U

  21. Deborah babcock at 11:00 am

    Im in constant pain..if its not my migraines then its my buldging disks in my back,my hips from burcitis,my legs from restless legs disorder,pains shooting through me from diabetes,my stomach from IBS,so,im in pain literally from my head to my toes…no pain relief….its worse on your body to be in pain than to take opiods..my pain meds were taken from me when this whole thing started…i have resorted to CBD oil at night just so i can sleep for a few hours…i have insomnia due to pain issues…nothing works for my migraines but pain medicine even then im suffering desperately until it kicks in and relieves the pain..my muscles through my body are always in a ball…my question is…should i go higher up than my doctor or get an attorney because this isnt right to let a person suffer in pain when there is medicine that can help…i would never take anything unless i had to never asked to up my dose or for more pills…Not Once…im not sure how to approach this i know attorneys dont like going after doctors etc…

  22. William Dorn at 10:03 am

    Please use your connections to get the truth to the right powers in washington.You can do more than we ever could.Many of us are running out of time.

  23. Jim Moulton at 9:07 am

    Thank you for sharing your story. It means a lot to us folk who have chronic pain and have to deal with doctors, and family who don’t think you need opioid pain medication.

  24. Lillian at 8:53 am

    Thank you for sharing your moving story with us; and congratulations for your (long in coming!) recovery.
    I know you are a very informed woman and certainly knows where most of the high ranking political members fall in this issue but I wanted you to know that last month I sent an email to Governor Chris Who was appointed in March to lead a special White House commission on the opiate “problem”. I received a reply back, at least stating he was aware of both sides of this issue. I don’t want to be naive but I hope this means a slight shift in the tide? We’ll see!

  25. karen duffy at 8:53 am

    Thank you! I admire your commitment to sharing your experience of living with chronic pain. I’m also in my second decade of life with debilitating pain, and the more stories we hear, the greater understanding we can generate. Pain can destroy language, and you skillfully expressed how you navigated your life and career while in pain.

  26. Angelica Heavner at 8:50 am

    Thanks so much for speaking up and telling them the truth. Unfortunately to many people making decisions that shouldn’t be have absolutely no clue and will never listen until they themselves have chronic pain. I dont honestly wish this on anyone but the so called powers that be need a clue about what they are doing to so many people.
    I use to take 2 bendryl and be knocked out for 8 to 10 hrs before getting CRPS/RSD. Now even sleeping pills dont give me any sleep. I am lucky to sleep for 2 hrs at a time. I hate having to take medications much less the stronger pain meds. I have no choice if I want to do anything, including taking a shower. The two meds mentioned above suboxone, naloxne (spelling off) are actually more dangerous than the medication we are on already. Forcing patients to change meds that are stable is illegal, also what happens to the patients who have an allergic reaction to the new meds?, do they get the other back or told tough?

  27. Signe Topai at 7:48 am

    ME TOO! I will join you and thousands of others, when you are ready to fight this fight in congress or a court of law. I feel my civil rights to appropriate treatment is being violated. I have literally been turned away from Kaiser’s Urgent care when in a horrible debilitating flare. I was left to suffer alone or spend thousands of dollars on ambulance and hospital services. When it could of been treated by a single visit and copay to my Kaiser’s Urgent care. They won’t even tell me why, I was refused treatment! I have NEVER ABUSED MY MEDS! There are thousands of civil rights violations stories out there. We need to start filing lawsuits! Thank you for your presentation, will you help us with Congress and in the courts?

  28. Terri Boettcher at 7:36 am

    I would join Scott Michaels in going to Congress!

  29. Danny Elliott at 7:15 am

    What a powerful and wonderful description of what so many deal with, in terms of pain. Thank you, Kate Nicholson!

  30. sandy auriene sullivan at 6:15 am

    Thank you for sharing your story and using the TED talks platform to reach people who may already have their mind made up by listening to the media hype.

    As a disabled American with intractable pain [too many issues to list, involves entire spine and musculoskeletal system. EDS-hypermobility and a spine collapsing] Ive been fighting the guidelines and explaining them to my doctor of nearly a decade since the CDC started on them in 2015. He thought following them would keep the local/state/feds out of his office. How wrong he was…. now my *pain* specialist will no longer take on new patients – for pain. My specialist is also my primary. He was raided Oct 2nd 2017, all equipment taken, a huge drone was placed over the area during the ‘raid’ – his name plastered on the news [he’s from India] and they gave him everything back with an apology the same week.

    They are literally bullying him. So when I saw him again, despite being at the 90mme dose since September and doing ‘ok’ [could be better, def could be worse…] 31st October I see him only to be told that my PAIN specialist will no longer treat pain with conventional opiates in sch II and only suboxone. Even ‘off label’ — my family and my doctor had a very long discussion about this as there is only one use for suboxone and that is for addiction. His off label use has to come with *letters and clear notes in medical file* that it is for chronic pain and ‘uncomplicated’ use of opiates for treatment of pain.

    The dose of suboxone is OK. It is higher than 90mme. That’s the glaring irony. We pain patients do not get ‘high’ or ‘euphoria’ from our medication. So the naloxone in suboxone isn’t relevant to me. The opiate in suboxone has been working at the starting dose of 8mg/4mg.

    No doctor, especially a specialist in pain should be bullied into putting all of his patients on the *same* drug [my pharmacist is complaining they cannot keep enough suboxone in now because he switched *everyone* over….]

    Yet, here we are. Suboxone is expensive. There IS a case here and it’s not against my doctor. It is against the DEA for interfering with my care, it is with the FDA and CDC for compiling guidelines that hurt the disabled and discriminates against every patient in pain who needs pain meds for well documented disabling injuries?

    I warned him; it won’t help keep him off the radar and is he willing to join forces to fight back yet?

    Surely a civil rights lawyer suffering from chronic pain can find the case against the agencies hurting patients? Or several of you can find cause? If we all come together, doctors, patients, pharmacists, and even some drug makers – asking the government to cease and desist the bully tactics as it is hurting and disabling people who are seriously ill.

    [there’s case law already – US district court sometime between mid 90s-2000 stating addiction fears are not legal cause to withhold pain medication especially in terminal patients. That’s not just hospice terminal but hospice folks are being denied too!]

  31. Teresa Chalk at 5:45 am

    Your story is so moving! I suffer from severe chronic pain and have had any access to treatment for it for just about a year now. I now have no quailty of life and am basically bed ridden. My pain story was published here a couple of weeks ago.

  32. nana at 5:42 am

    Thank You for sharing.

    I wish your profession would help you find someone who could represent us fin litigation to re-change this war on pain patients currently going on.

    I too, suffer from spine issues. C-2 to T-3 fused and laminated. L-5-6. I understand reclining.

  33. scott michaels at 5:34 am

    CAN YOU TAKE THAT SPEECH TO CONGRESS IM SURE IF NOTIFIED, SEVERAL THOUSAND OF US WILL JOIN YOU. I AM ONE OF THEM

    THANKS

Leave a Reply

Your email address will not be published. Required fields are marked *