What Is the Icon for Chronic Pain?
The Icon For Cancer: The Jimmy Fund
Say what you will about Boston sports teams. One of them, the Boston Braves, helped launch “The Jimmy Fund.”
It all started in 1948. At that time, members of polite society rarely mentioned cancer. Fear, superstition, and ignorance caused people to whisper about cancer, steer clear of anyone who had been diagnosed with it, and even refer to it as the “c-word.”
This state of affairs, unfortunately, marginalized cancer patients and their needs. It also slowed down cancer research. Progress to find treatments was dismal, and there was a lack of awareness of how much could be accomplished if only people felt empathy for cancer patients.
But that all changed when organizers launched the Children’s Cancer Research Fund to further research and advocacy. The stroke of genius lay in putting a sympathetic face to a problem that had lacked a public image.
They found a child with a rare intestinal form of lymphoma in his intestines who also happened to be a baseball fan. “Jimmy,” surrounded by Boston Braves team members, was introduced to the country via the “Truth or Consequences” radio program.
The public response to “Jimmy” and the call for “quarters, dollars, and tens of dollars” to support the fund was overwhelming. The organizers of the fund had set a goal of $200,000 that — if reached — would buy “Jimmy” a television set on which he could watch his revered baseball team.
The Jimmy Fund raised $231,000 — which the author of this article on the Jimmy Fund web site points out — was a drop in the bucket compared to what the Manhattan Project spent every month ($100 million), or what Americans spent on Coca-Cola that year ($126 million).
But $231,000 was enough to change everything for cancer.
Taken from a taboo topic that was buried in “its basement” and brought up into “the glaring light of publicity,” cancer became an important topic of public conversation. A demand for funding research to help cure people with cancer like “Jimmy” began, and we’ve never looked back.
The Icon for Chronic Pain?
In the area of pain research and advocacy, we have a problem that’s similar to the pre-“Jimmy” days of cancer. Our national spending priorities are no less skewed than they were in 1948.
Chronic pain is still “in the basement” as a feared, misunderstood, and easily dismissed topic of conversation. Who is qualified to speak to all Americans in language they will take to their hearts and thus, open the way for the “cultural transformation” called for by the IOM?
Who will be the face of chronic pain? Where is the red or yellow ribbon (or any other symbol) that will raise awareness of the plight of chronic pain patients?
Where are the Boston Braves when you need them? Where is any team of high-profile heroes, or an individual celebrity or CEO, who will rally around chronic pain patients and inspire the public to listen to their plight?
Changing the Chronic Pain Discussion
Changing the national discussion from opioid abuse to better cures for chronic pain would be an important, positive first step. So what’s stopping us?
It would require the same cultural shift in attitudes as we experienced more than 60 years ago for cancer research.
Cancer has shown us the path. Now it is up to advocates for pain research to choose their icon or symbol to be the inspiration of a social movement.
Purchase my book The Painful Truth: What Chronic Pain Is Really Like and Why It Matters to Each of Us (available on Amazon) or read a free excerpt here.
Find me here:
Copyright 2016, Lynn Webster, MD
I went to the emergency room with a severe migraine. The kind of headache where you want to cut your head off to stop the pain.
I had been recently diagnosed with fibromyalgia and was comforted to finally know that I did have a really condition and I wasn’t simply a wimp. I was being prescribed medication to help with my myriad of health problems. Insomnia, migraines, muscle pain, sensitivity to light and sound, depression, andfatigue, Finally I was feeling better, my depression was much improved, and pain was less severe. My symptoms weren’t gone, but it was a a level where I could function better.
The nurse in the ER took my medical history including the medications I was taking. Eventually the doctor came in. I’m in excruciating pain and he starts criticizing me for all the medications I was taking. Telling me I needed to get off of all these medications. Instead of relief, I got a lecture. I told him that he had no idea what I was going through, and that I was finally at a place where I didn’t want to die anymore. I finally had some relief, I was crying from the pain I was in and I was really upset that I’m getting a lecture. He finally got me an injection for the migraine. I finally had some relief. When the ER doctor returned he apologized for getting on my case saying he was concerned to see me taking so many medications. Then he told me that my doctor needed to find out why I was getting these migraines and do something about it.
I left the ER really mad that this ER doctor who didn’t know me was judging me and my doctor. I never wanted to have to go back to the ER ever again. My doctor did get me a more powerful migraine medication, and I have much fewer ER visits.
It’s been about 10 years since that ER visit, but I still hear from well meaning friends that I need to get off my pain medication. I no longer get upset by those comments, be cause I know they are ignorant of chronic pain.
My new problem us the changes in healthcare laws. It is much more difficult to get my medications. I’m on Medicare and many of the medications I was taking were no longer covered by Medicare, now we had to try various new medications to replace what was working. I can only get a 3 month supply of any controlled substances I take. I am required to go to the doctor every three months and they only thing I need is for them to fill out my prescriptions. Before the change in controlled substances I went once a year for my annual physical and prescriptions with refills that would last the year, unless I got sick during the year. I have never abused my medications over the past 14 years, since I was diagnosed. Yet I feel like I am being punished for having chronic pain. Every year Medicare seems to stop covering one of my medications. One medication I have to pay $400 for a two month supply, and that is only one of the dozen prescriptions I take.
I think it would be wonderful to have our own awareness symbol. Awareness that we are not drug addicts. Pain medication makes me normal. I have never felt “high” when taking any of my medications, but I feel like dying when not taking them because the pain us unbearable. Thanks for writing a book that will educate an ignorant world who think they Ned to lecture us on becoming addicted. I don’t care if I’m addicted I’ll be taking pain medicine rest of my life.
Boy do I know how you feel. I too have fibromyalgia, chronic fatigue, chronic migraines, all my discs in my thoracic are blown. All of my discs in my neck are blown already had a double fusion in my neck. 5 of my lower back discs are blown and have had 2 surgeries on my lower back with a fusion. I have hip arthritis. Actually arthritis throughout my body. And much more pain and problems. I am only 45. I am on Medicare and Medicaid. My nurse practitioner don’t believe I hurt that bad. She will only prescribe me Vicodin 10/325 which isn’t enough to help my everyday pain. She even took me off my Valium which was for my muscles and migraines it also helped me sleep which I don’t do much of. I just wish we ” Chronic Pain Patients ” could get more help and understanding.
Your last paragraph says it all for me.
I hear you,loud and clear. I am chronically ill and in severe chronic pain. What can we do change the public perception ? We suffer enough.
Jody there are several things you can do but the most important is to let your US Senators and Representative know how the current discussion around opioids is affecting you. Also send a letter to Dr. Friedan and the CDC and explain how pain affects your life. You can find a template for a letter to your Senators on my other website LRWebsterMD.com
yesterday I had a surgery to remove a heart monitor which was implanted To discover whether my 18 syncopal episodes were caused by a cardiac arrhythmia. I had told them preop that I wanted to be sedated with Diprovan which is also called milk of amnesia by anesthesiologists because even though I could not have narcotics due to a history of hyperalgesia from long term high dose narcotics prescribed by docs for chronic pain, I would not remember the pain if the numbing medicine did not work, because it doesn’t always, and they did not give a nerve block. They only booked a nurse, she just gave one mg of versed, which is like nothing after all the meds I have med on. I felt every stitch I felt the burning of the cautery, I let them know I was in pain, they just kept going, The doc dug around in my shoulder with a knife for 45 minutes with me fully awake, something has got to change. I am in so much pain. medical MJ compassionate cae needs to be given to all people who have chronic pain who cannot tolerate opioids, and intra op policies most chance as well to make certain that people who cannot have opioids have proper anesthesia.
Created a symbol for fibromyalgia years ago. My website was thefibrostop.com The symbol is called the hope -a-gram. Just got my domain name back and starting the website back up. It is a work in progress right now. If you would like to check it out, the symbol is at least up.
Congratulations! Wonderful that you have a symbol. I hope to have a common symbol that would all advocacy can rally around. I hope you will join all the others.
Yes I would like to see the symbol
my email is ynot2227@yahoo.com Thank you Alice
If you even need blog posts for your new website let me know. I’ve love to tell my journey through hell with my pain issues and doctors being frightened to prescribe.
Hi Lori
I would be glad to consider posting your story. Please contact sjmiller@bookpr.com
Thank you
I have recently been referred to a Pain Management doctor for extreme migraines and FM. His care has helped incredibly with the amount of migraines and intensity. I am very thankful to my Family doctor for referring me to him. After 42 years of searching for relief through many doctors and medications, I finally feel I have a handle on my migraines. The pain management doctor was also to relieve some pain in my hips and back. The relief doesn’t last more than a week, but that is certainly better than anything I have tried.
What did the doctor prescribed to you Carole??
I have been dealing with the stigmatism that is associated with having chronic pain since a bad wreck in 94. In those 22 years I have been labeled a drug addict, a drug abuser, and a drug seeker. Most of those labels were thrown out by doctors who are totally ignorant of what we deal with on a daily basis. I have been diagnosed with Trigeminal Neuralgia, Occipital Neuralgia, Anesthesia Dolorosa, Migraines, Fibromyalgia, and also bulging discs. I have had numerous brain surgeries and procedures to and am still on numerous opiods and other various meds. The meds are not ideal but they do allow me to get up in the morning and at least function as somewhat of a semi-normal person and sleep a little at night. I am set to have another surgery on the 19th and am praying that this one will finally be the one to eliminate at least some of my many problems. I could write a book with the many drs visits and er visits and how bad they have been over the years. But there are some good ones out there as well! To each and every one of you I can say don’t give up hope, I am 46 years old and one thing I have learned is that each and every day no matter how bad we have it is worth living. I wish you all well!!