Tag Archives: pain

Who Isn’t Touched By John Clare’s “I Am”?

1 Jun

Green Meadow w/Clouds Both Light and Dark Above

I Am
by John Clare

I am: yet what I am none cares or knows
My friends forsake me like a memory lost,
I am the self-consumer of my woes–
They rise and vanish in oblivious host,
Like shadows in love’s frenzied, stifled throes–
And yet I am, and live–like vapors tossed

Into the nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life’s esteems;
Even the dearest, that I love the best,
Are strange–nay, rather stranger than the rest.

I long for scenes, where man hath never trod,
A place where woman never smiled or wept–
There to abide with my Creator, God,
And sleep as I in childhood sweetly slept,
Untroubling, and untroubled where I lie,
The grass below–above the vaulted sky.

John Clare was born into a peasant family in England 1793. Although he was the son of illiterate parents, Clare received formal schooling til age 12. Through earning money as a agricultural labor (long, difficult days spent ploughing and threshing), he published several volumes of poetry.

For a short time, Clare experienced a brief albeit condescending popularity as Northampshire England’s “Peasant Poet,” at a time when illiteracy was a norm for rural workers. For at that time, poetry was expected only from those in high society.

This was a short-lived dream, sadly. As they say… ‘All sad people like poetry. Happy people like songs.’ Though it’s apparent he was a gifted writer, the sadness, isolation and financial hardship wore on Clare. After suffering from delusions, he was admitted to an asylum where he spent the final 20 years of his life. — Heather Grace, IPJ


About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.


Pain Reality Day—September 9th: Vital Chronic Pain Event on Social Media

6 Feb


By Heather Grace, IPJ Staff Writer

Speak Up! Sept 9 is #PainRealityDay

For far too long, those of us who live with chronic and intractable pain have spent a great deal of time hidden away, behind closed doors—especially when the pain becomes overwhelming. It’s time to change that! Please join us in sharing what it’s really like on a typical day of a life lived in pain.

Show the world what it’s really like to live with chronic pain by being part of the 1st Annual Pain Reality Day—YOU are invited! Join us via social media all day 9/9/15, using hashtag: #PainRealityDay. This new social media event will take place every year on September 9th as part of the annual Pain Awareness Month campaign.

It’s time to tear down the walls that have separated us from the “normal” world for far too long—to finally fight the misconceptions about pain patients with a healthy dose of truth! Are you brave enough to snap a few pics or a quick video that shows the unshowered, PJ-clad reality of one of those days when you’re just too damn sick to step outside & pretend everything’s ok?

Good! So am I! Why? The world needs to see our puffy-eyed, slightly disheveled excruitiating truth! Maybe then, people will think before they once again brazenly say: “you don’t look sick” (or whisper it, behind our backs). They need to know what it’s like to hurt so badly you can hardly breathe, much less go out into the world and brave another difficult day among the misinformed masses.

They need to know how tough it is to be seriously ill yet seen as a lazy, possibly drug-addicted pill popper. They need to feel the indignity each of us has felt, as we beg doctor after doctor to respond appropriately to our cries for help. They need to understand the anguish of losing an entire support system one person at a time when you need them most—your best friend, your mother, your significant other.

Only someone like YOU, who has suffered one unthinkable chronic pain-fueled tragedy after another, can tell the world what it’s like to slowly fade into invisibility but still be fighting to be believed. So, let’s finally say the things that must be said. Let’s unite as we open the doors to the private hell of the pain patient. We need to be heard just as much as they need to listen!

You’re invited to share each and every raw, real, enlightening truth about your pain during the inaugural Pain Reality Day, September 9th via Twitter, Facebook, your blog or the social media app of your choice. Don’t forget to include the hashtag: #PainRealityDay with each post!

Oh, and feel free to share this event with *everyone* you know who’s impacted by chronic pain: https://m.facebook.com/events/330332963834825.

All About #PainRealityDay

Show the world what it’s really like to live w/ Chronic Pain—all day 9/9/15, the 1st Annual Pain Reality Day, via the Internet. This is an advocacy event that will take place across the whole of the web—every blog, Twitter account, YouTube video and Facebook page belonging to people impacted by pain. Don’t forget to add the hashtag #PainRealityDay to each post, video or blog entry!

Who’s in? Please join us, but don’t forget to share this event with *everyone* you know who is impacted by pain patients, caregivers, health professionals, advocates, loved ones, the media! Share it via Twitter, Facebook, YouTube, etc. This day, 9/9 is for everyone who is advocating for better treatment of all pain patients. Tell everyone to visit PainReality.com for all the details!

What should you share? Any information that expresses YOUR Pain Reality… people need to understand we are just like anyone else with chronic illness invading every aspect of our lives—except that we are also persecuted for our condition. Tell them how it feels to have the people you love most suddenly not support/understand you, or worse—believe you’re lying/exaggerating our your condition. Explain how Healthcare professionals have treated you, just for wanting the help you need to get better. Tell the world how you have had to set aside your feelings/dignity far too many times as people mistreated you for being sick.

If you’re like me, you’ve lost a great deal to your illness:

  • your career/ability to work a “normal” job
  • your social circle-because you can’t just hang out with friends whenever you want
  • relationships with people you thought would be there ‘no matter what’
  • your home & any semblance of financial security
  • access to the quality of healthcare you could once afford

Express how it feels to lose a great deal of what made you you & to suddenly be dealing with your serious health issues alone. Or if you’re lucky and have family support, share how you have to meet familial obligations/expectations by pretending you’re well enough to do/be what they expect you to… often by pushing yourself/overdoing it/making yourself more ill.

How should you share? Via any social media app (Facebook, Twitter, YouTube, etc.) or your very own blog/vlog—using the hashtag #PainRealityDay. TIP: Using short video clips/vlogs, audio clips or photos are great ways to share your pain reality, in addition to text posts.

Get as personal as you feel comfortable! Remember, #PainRealityDay is about making the world see us for who we really are! So, feel free to openly share all the ways pain challenges you & has made your everyday life different than it once was—before the pain. Got a famous quote from someone who lived with pain helps express how you feel? Or a psinting from a tortured artist? Those are also great ways to express your journey!

Share as many times as you’d like on September 9th, on any social media app… So long as you use the hashtag #PainRealityDay, your story will be connected to this important event. We will be hosting/sharing everyone’s posts via PainReality.com & on this blog. Note: The site is still being worked on, so for now it’s just this introductory information that’s been posted, but more is coming very soon!

When on September 9th? #PainRealityDay is all day long, so join in whenever you are ready! We will start at 12:01am and end at 11:59pm your time. Anytime you feel up to it, throughout the day, share aspects of your world with chronic pain via #PainRealityDay!

People need to see our reality, so please join me in sharing it! YOU are invited… to share our common reality and unite with all of the people who are just like you, on 9/9. In the meantime, spread the word about September 9th — Pain Reality Day, by using the hashtag #PainRealityDay! Feel free to link to this page and to the event on Facebook, as listed above. Can’t wait to ‘see’ you all there!

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Life with Nerve Pain: True Story of the Princess & the Pea

25 Aug

“Advocating for Another” Carnival 2012 – Day 5

by Heather Grace IPJ Staff Writer/Storyteller

Have you heard the story of The Princess and the Pea? The princess suffered a lot more than discomfort and lack of sleep from a tiny green pea being under her mattress. There’s a lot more to the tale. You haven’t heard the whole story… Until now.

In this fairytale, learn how facing the reality of her nerve pain changes a very sick little girl into the princess she was meant to be.

Go ahead… Curl up and listen, just like you did when it was “story time” as a child:

True Story of Princess and the Pea (MP3)

Feel free to share this story with children who have chronic pain, intractable pain and especially nerve pain. And, if you live with pain, this fairytale may you help explain to children what people with chronic pain go through. I look forward to your comments. Enjoy!

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The End of American Pain Foundation–A New Beginning for Pain Advocacy

10 May

The American Pain Foundation may have come to an end, but the advocacy efforts of APF’s Action Network will be reborn.

by Heather Grace, IPJ Staff Writer

While I by no means speak for the American Pain Foundation nor the Action Network Leaders, as a Leader myself, I *do* realize what a shock the loss of APF is to people with pain across America, and worldwide. (See APF notice regarding the closing, released May 9.) I think it’s important to note that in addition to the work that is being done to re-home the vast APF database of articles and information as was noted on the APF web site, the advocacy efforts will also continue.

Please know that there are very capable individuals working toward solutions that will ensure the vibrant pain community that existed on APF’s web site(s) is rebuilt. We, as Action Network Leaders are doing all we can to support the rebuilding efforts, as well as our ongoing advocacy projects. Behind the scenes since Tuesday the Action Network, APF’s grassroots advocacy team, have been discussing future plans. The volume of people who have stood up and asked “What can I do to help?” are a testament to the dedication of this wonderful group of advocates.

Even more importantly, we have continued speaking out for the rights of people with pain, and we will continue to do so in every possible medium. We have come together like never before and are determined to continue our work as advocates via Facebook, Twitter, blog/article and interview, to bring a promote a message that represents all people with pain. Each of the Leaders strongly believes that all people have the right to timely, appropriate and effective pain care.

While the loss of APF will be felt for some time, it does not change the dire situation for all people with pain in America nor the need for pain advocacy. Pain is a national health care crisis, a hidden epidemic, and the problem continues to worsen. This is why the Action Network was formed, and continues to grow. We are a dedicated network of volunteer advocates from over 35 U.S. states and Puerto Rico. We are people living with pain, caregivers and health care providers who work collaboratively with other advocates, professionals and organizations to transform pain care in America through grassroots advocacy.

Yes, this is a difficult time for everyone, but I hope all people impacted by pain will see this as an alarm being sounded. If you have the passion to make a difference—please do so. Join this fight. It’s time to stop believing someone else will do it–it’s your cause just as it is my cause. Please show your support via the Action Network California Facebook page. If you feel strongly about the pain advocacy movement, LEAVE A COMMENT ON THIS PAGE letting the Action Network know you are interested in advocacy. We need your help now more than ever!

With all the passion of an advocates heart,
Heather Grace
California Action Network Leader
Twitter: @IntractablePain

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The American Pain Foundation Closes…

9 May

Posted on the American Pain Foundation web site on Tuesday, May 9, 2012:

With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. On May 3, 2012, the Board of Directors formally voted to dissolve the organization.

The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.

APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.

Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds — have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.

As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.

It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.

Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. Please know that although APF will cease to exist, the resolve and commitment among individuals on the Board and staff remain strong.

Intractable Pain: Our Story—Why We Became Advocates

7 Mar

by Heather Grace, IPJ Staff Writer

Why We Fight: My Story

Imagine having a health condition that had progressed over the course of several years. First, it was a minor annoyance. You were prevented from doing fun activities after work, and certain seemingly vital chores got ignored little by little. Within six months, you became seriously concerned. Even after seeing doing all the doctor said, you weren’t better. And now, you were afraid to do more vigorous activities, like your favorite stress reliever, rollerblading miles each week. You’d already taken one serious spill because your condition was more severe than you wanted to acknowledge. Something was really wrong, and you felt it in your arms and legs. The more you worked, the worse it got. The boss was now angry that you weren’t putting in overtime anymore. The pressure was mounting, but you couldn’t pretend anymore.

You were forced to go into “the system.” Workers Comp was an added stress no one could possibly enjoy, but you did as you were told, and tried to make the best of the waiting game. Months turned into years, but your very necessary surgery was still in a holding pattern. The condition was now serious—clearly, you could not continue at your usual pace at work. You often spent your breaks in crying spells in the bathroom.

You felt hopeless. There were no answers. It felt excruciating, never-ending. More than that, it was as if entire systems of your body were failing. You couldn’t get comfortable to sleep. When you did, sometimes you only slept an hour at a time. Sometimes you just drifted in and out of consciousness, awakened so often by the feeling of a piercing hot poker slicing down your spine. Other times, you felt your heart would beat out of your chest. Whatever this was, you didn’t understand it, or have a word for it. It was pure misery. Worst of all, there was no diagnosis.

You dragged yourself to one appointment after the next, always with the same result. They all seemed to shake their heads. They didn’t know what was wrong. Sometimes, they were mean and accusatory. It often felt like they weren’t sure if anything actually was wrong… Still, you were in a spiral, unable to reclaim the person you were even a year ago. The person you were five years ago was completely unrecognizable.

You knew the job was killing you, but it almost didn’t matter. No matter what you did, it kept getting worse. Spending 16 hours trying to recover from the 8 you were at work was now not enough. From total ‘Type A’ overachiever to… THIS? Your primary doctor cautioned you, said you should go on leave. You knew it would be the end of your career, so you refused.

Soon after, the employer would force you out. By that point, all you could muster was a vexed look of betrayal and confusion. Yes, you were very concerned with how you’d keep a roof over your head, but in a lot of ways, you were relieved. This illness was all-consuming. You knew it was bad, really bad.

If they’d just listen, the doctors would get an idea of what this was and how to fix it. But, they seemed to have their minds made up before they even saw you. They just didn’t want to see that pain had taken you over and you were disappearing a little more each day. You were a young woman that used to have such promise… a good job, money in the bank, a bright future. But now everything hurt. It used to come and go. How you wished you could go back to that time… you had thought the pain was horrible then, but now you wished for that kind of pain. Just off and on, yes, that was manageable. But this? This was nearly unlivable. Unspeakable. Torturous. But none of the medical professionals wanted to hear it. As soon as you said that simple, four-letter word, they shut off: P   A   I   N.


No, it wasn’t that, they thought. They were neurologists, orthopedic surgeons, physical therapists, pain management doctors, even. Yet, they wouldn’t hear you. It couldn’t be pain, no, it wasn’t. You were too young. Instead, maybe you were just another one of those liars. An attention-seeker. Or worse, an addict. The appointments seemed to get shorter and shorter, and the wait to see the doctors, longer and longer. Unbearable, unspeakable, suffering. Misery. Yes, from time to time, you doubted yourself, because you didn’t really want to believe it, either. They were all so cruel, and at the same time, so certain you were wrong. But the searing pain shooting through you always reminded you of the reality of the situation… the pain–all of it–was indeed real. It was also very hard to take.

And once the doctors started doubting you, others followed. First, your employer… coworkers were whispering. You were less than impeccably dressed as time wore on, not at all yourself. You marveled that you’d made it to work at all, but still they scoffed. It was clear the boss wanted you gone. The people you counted on—your closest friends and even family—were not far behind. Doubt was a secondary sickness that seemed to infect the people around you, no matter how hard you tried to keep it together. You were extremely ill, and you were the only one who really seemed to know it. It took so much energy to leave the house now, to be around anyone who you had to be “okay” for. But you knew the truth of it all: the pain was wearing you down to nothing. You were losing this battle, and no one seemed to even offer a single answer as to what was causing it, or what could make it go away.

To Search for Normal, Or Say Goodbye

You wanted to go back to normal. Where was normal? Desperation set in. You couldn’t force yourself to clean the house. No more cooking, not for yourself and certainly not for guests. You ate less and less; barely mustering the buttons on the microwave, but nothing more. You cried all the time now. More and more of that strength you’d always had, that will to fight left your body. Not because you didn’t believe you deserved help, but because your body could only take so many years of fighting

At a certain point, you decided it was time to give up. It was too much, you were too weary, and in far too much agony to keep going. If the pain had no end, if there was no “normal” to be had and the allies had all but disappeared, it was okay to say goodbye now… Despite the person you once were, you were at peace with your decision to end your life. It had been seven long years. More than most would fight… All you really wanted was a fool-proof way to end it all. No doctor would treat you, they barely looked at you. Now, you didn’t have the strength to disagree. It was just too hard to go on fighting.

Even as you’d decided to die, something deep down inside you wanted so badly to see light at the end of the tunnel, that you told yourself, “Ok, I will see just one more doctor… But if he can’t help me, that’s it. No more.”

Maybe that doctor was in West Covina, and he had saved many people, just like you. And when you spoke to him, he asked you questions, he wanted to know what was wrong. You wept, merely because he listened, and didn’t judge you. And even though words like Morphine scared you a little, it was better to keep trying. 

And this doctor did something that made you more assured than you had been before. Instead of patronizing you by patting your hand and saying everything would be just fine, he told you the cold hard truth: That “normal” was out the window, and it was time to begin again. It was time to see where this treatment could take you, but you had to stop making yourself crazy with the idea of who you once were. It would hurt to let that “ideal you” go, but you could do it if something better than THIS awaited you…

You put your faith in this treatment, because you knew deep down, life could still be worth living. So you did exactly as the doctor said, followed all the rules, and you even started to a little feel better month after month. And month after month, you let go of the back-up plan of suicide. You decided that as hard as this road was, and would still be, you would take solace in this third option. No, it wasn’t just a choice between going back to normal or committing suicide. There was a third option, after all. You chose to rebuild.

Rebuilding: The New You

Best of all, you weren’t alone anymore. Someone wanted to help you find the pieces of the puzzle that would make you whole again. He put his heart and soul into not just his patients, but research to help everyone with constant, severe pain. Intractable, it was called. And, he had an army of dedicated patients who were so enthusiastic, it was infectious. You could actually envision a life full of meaning, even if you never worked again a day in your life. What a refreshing thought that was! So many tears over the loss of career, who you thought you were. But the inspiring people you met–what a joy it was to be around them when you’d spent so long in such a dark and scary place!

You had seen the power of giving in a person who was seriously ill… seriously ill, just like you! But she was a powerhouse of love and support to all the people with intractable pain who needed her. It made you want to work on yourself, to get to that point… to be of help to others, like she was. Because for the first time, you could envision doing something that made a real difference, even in a small way, when and how you were able. Why? Because helping people didn’t have to be a full-time job… you just had to give of yourself how and when you could. It was both inspiring and exciting!

Soon, you’d gotten back enough of your old self to remember who you used to be. And you knew that you would soon take up this cause, too. Heck, you had no choice. The fact that you stepped back from the ledge was a true miracle. You wanted more than anything for others who were nearing the ledge to get their miracles, too. The more people you could save from going over the edge, the better. You wanted to help them see there were options, even for people with severe constant pain. You didn’t want them to actually end it, like you almost had.

You could be useful, help save lives. You could be the support system for someone else when they thought there was nothing and no one left. Maybe they would find more reasons to step back from the ledge than you first had… Because, in all honesty, you still aren’t sure why that voice inside you said, “Stop, wait, not now, not yet,” when you got to that point. You truly had no one there to stop you, but yourself.

Yes, you would help people who were nearing the ledge, and even those who stood upon it. You would save as many people as you could. Dealing with intractable pain was a war within the body, and often it took someone who had been there to help you find a way out. And, maybe through telling your story, you could even prevent people from getting to the edge in the first place! Maybe by letting people know that chronic pain could lead to intractable pain was a strong enough message to help people get early treatment, and save them from living the rest of their lives in pain.

An Advocate’s Heart

The more you fought for people with pain, the more you realized what a serious struggle this would be. There was no easy road, especially when it came to intractable pain. People with IP had to work harder, doing more to keep their health where it needed to be. They had to find a pharmacist they could count on… someone who wouldn’t judge them, or insist that high dose opioids would kill them. Or worse, report them to the DEA for suspected abuse, merely because they didn’t understand intractable pain. They had to educate themselves on all of the other things that would help them live better lives. It was vital to get in the game, 100% and never stop learning about this illness.

You lived with hope, and a lot of it. But, you also lived with the fear that any little problem could bring an end to the life you’d fought so hard to win back. You supported others, and tried to build them up, too. And when you found someone who understood, you treasured them—they were family. A piece of your heart was healed because of the support they gave you. And you hoped you did the same for them. People who understood helped each other to carry on when the pain was bad. They checked in on you, like no one else knew to do. They were there to help when something went wrong that you had no control over. Together you were stronger, more prepared to fight for each other, and for this important cause.

You never envisioned having to do so much to keep yourself alive, but you did it gladly. You tried to be good to yourself, preventing any stress that could cause you undo suffering. You picked your battles more carefully, knowing that so many small things didn’t matter at all anymore. You appreciated life in a new way—and you found happiness wherever you could. Simple things were beautiful, amazing, inspiring. They were to be treasured. Most importantly of all, you told as many people as possible about your experience, hoping that one day, the world would understand.

And if, by some horrible chance you were caught up in ‘the war on drugs’ because of your treatment, you would be honest, and explain your plight the best you could, and hope for the best possible outcome. You would do what you had to do, in order to survive, knowing that the law supported you, even if most people didn’t understand. Yes, your intractable pain meant a regimen of prescription medication, along with many nonprescription treatments including protein, vitamins and supplements. You knew you were doing the right thing, and that mattered. Not just for yourself, but for everyone else with intractable pain that needed support, that needed to rebuild.

You would show them the reality of a life of pain ‘til your dying breath. You would share, help, guide, educate. You would bring cheer. You would listen. You had an advocate’s heart, and vowed to never stop trying to change people’s minds.

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html  http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

An Historic Event: IOM Releases “Relieving Pain in America” Report

1 Jul

July 1, 2011

by Heather Grace, IPJ Staff Writer

Anyone affected by chronic or Intractable Pain knows the heartache, stigma and shame often experienced. Even when speaking to medical professionals or loved ones, we are doubted, judged and sometimes even accused of wrongdoing. Why? Merely because we state our symptoms–the main one being an excruiating degree of pain that no one should ever have to live with.

Yet, far too many people suffer in silence, choosing to just ‘deal with it’ because the alternative is a long, winding hellish road… filled with anger, sadness, disappointment and grief. When the pain gets to be too much, some make the terribly disturbing choice to end their own suffering–via suicide.

It’s a story that is all too common in the pain community. And yet, this deplorable level of misunderstanding, medical neglect and unnecessary death does not exist for sufferers of any other disease.

A ground-breaking report that studied pain from many angles was released on Wednesday, and the buzz is generally positive. Will attitudes toward pain change in the not-so-distant future? Only time will tell, but it is about time that pain is seen as the devastating disease that it is.

In addition to defining chronic pain as a disease,the Institutes of Medicine’s (IOM) Relieving Pain in America notes some very important facts about pain. The two most noteworthy tidbits?

    1. Chronic pain affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined.
    2. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity—an amount equal to about $2,000 for everyone living in the United States.

IOM’s Committee Advancing Pain Research, Care, and Education reviewed literature, statistics and research; they also spoke to medical experts and members in the pain community in five cities from November, 2010 through April, 2011. The resulting report includes 328 pages of detailed Findings and Recommendations. The plan for this report? Congress will use the recommendations to revamp its approach toward the treatment of pain, in an effort to make things better for pain sufferers now, and in the future.

Some of the key findings from the report are found on page 1-9, Box 1-4:

Pain By The Numbers

  • 116 million—number of U.S. adults with common chronic pain conditions
  • $560 to 635 billion—conservative estimate of the annual cost of chronic pain in America
  • $99 billion—2008 cost to federal and state governments of medical expenditures for pain
  • 60 percent—percentage of women experiencing their first childbirth who rate pain as severe;
    18 percent of women who have caesarean deliveries and 10 percent who have vaginal deliveries report persistent pain at 1 year

  • 80 percent—percentage of patients undergoing surgery who experience postoperative pain; fewer than half report adequate pain relief:
    • Of these, 88 percent report the pain is moderate, severe or extreme;
    • 10 to 50 percent of patients with postsurgical pain develop chronic pain, depending on the type of surgery; and
    • for 2 to 10 percent of these patients, this chronic postoperative pain is severe
  • 5 percent—proportion of American women aged 18 to 65 who experience headache 15 or more days per month over the course of 1 year
  • 60 percent—percentage of patients visiting the emergency department with acute painful conditions who receive analgesics:
  • median time to receipt of pain medication is 90 minutes, and
  • 74 percent of emergency department patients are discharged in moderate to severe pain
  • 2.1 million—number of annual visits to U.S. emergency departments for acute headache (of 115 million total annual visits)
  • 62 percent—percentage of U.S. nursing home residents who report pain:
    • arthritis is the most common painful condition, and
    • 17 percent have substantial daily pain
  • 26.4 percent—percentage of Americans who report low back pain lasting at least a day in the last 3 months

The Recommendations, which are detailed starting on page S-13 of the report, are divided up between aspects that should be put into effect right away. “IMMEDIATE: Start now and complete before the end of 2012.” The others? “NEAR-TERM AND ENDURING: Build on immediate recommendations, complete before the end of 2015, and maintain as ongoing efforts.”

Immediate efforts include:

  • Create a comprehensive population-level strategy for pain prevention, treatment, management, and research
  • Develop strategies for reducing barriers to pain care
  • Support collaboration between pain specialists and primary care clinicians, including referral to pain centers when appropriate
  • Designate a lead institute at the National Institutes of Health responsible for moving pain research forward, and increase the support for and scope of the Pain Consortium

Ongoing plans include:

  • Improve the collection and reporting of data on pain
  • Promote and enable self-management of pain
  • Provide educational opportunities in pain assessment and treatment in primary care
  • Revise reimbursement policies to foster coordinated and evidence-based pain care
  • Provide consistent and complete pain assessments
  • Expand and redesign education programs to transform the understanding of pain
  • Improve curriculum and education for health care professionals
  • Increase the number of health professionals with advanced expertise in pain care
  • Improve the process for developing new agents for pain control
  • Increase support for interdisciplinary research in pain
  • Increase the conduct of longitudinal research in pain
  • Increase the training of pain researchers

Overall, the approach seems like an effective plan. The execution of the plan will be the part that makes all the difference. If handled well, pain care could be revolutionalized. If led by people who are not truly knowledgeable, who let fear and a desire to prevent addiction rule their decision-making, nothing will have changed.

The future looks bright–but it won’t work unless people with pain share their stories, loud and often. Tell the IOM what you think of this report, and how you want to see pain care change. Email them at wwwiom@nas.edu.

It is time people finally knew the truth: We are not Nurse Jackies or Dr. House’s. We are, in fact, just like you or anyone… but, we cope with an unrelenting pain, every minute, every day. Don’t we deserve some real help, now, after all this time in the dark ages of pain care?

Having attended the IOM’s fourth meeting, in March, 2011, I am so pleased to see the progress made for pain sufferers everywhere. This report makes people like me hopeful, for the first time in a long time, about our future.

Testifying before the committee was my first big step into the spotlight, regarding my pain. I was outside the warm, welcoming arms of other people affected by pain. However, I was able to stand there proud, and tell my story honestly and openly. It felt great! Best of all, I was able to share with the committee some very important research from Dr. Forest Tennant, the Intractable Pain Specialist who saved my life. (This important research can be found in the article Objective Signs of Intractable Pain: Constant Severe Pain Symptoms ARE Diagnosable.)

What did I learn from my experience? Everyone who has been affected by pain should do what they can to get involved, in this way. These days, being your own Advocate isn’t enough. If you really want to make the world a better place for pain treatment, you have to be willing to work side-by-side with people just like you, creaing a common voice for the pain patient.

How do you do this? Consider becoming a Leader with the American Pain Foundation Action Network (like I did, thanks to my wonderful friend, Radene Marie Cook!) Visit their new and improved site at http://www.painfoundation.org/get-involved. Or, fill out the Advocacy Survey now. This link allows you to join APF for free, instantly; it will also allow you to connect with local APF Leaders, so you can learn more information about advocacy efforts in your area.

Want more information about the IOM Report? Here’s a sampling of media coverage:

Chronic pain affects 116 million Americans, says IOM report
Los Angeles Times – Marissa Cevallos
Pain is more than just a complaint — it’s a public health issue. And the time has come to do something about it. So concludes a new report from the Institute of Medicine, written at the…

Report: More than 100 million suffer lasting pain
Washington Post – Associated Press
(AP) — Nearly a third of Americans experience long-lasting pain — the kind that lingers for weeks to months — and too often feel stigma rather than relief from a health care system poorly prepared to treat…

Report: Chronic, Undertreated Pain Affects 116 Million Americans
TIME – Maia Szalavitz
Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine…

Pain Costs U.S. $635 Billion a Year: Report
U.S. News & World Report – HealthDay News
Pain afflicts at least 116 million adults in the United States each year and costs the nation $560 billion to $635 billion annually in medical and economic costs, according to an Institute of Medicine report released Wednesday…

Don’t blame people for their pain, report says
CNN – blog
Chronic pain – no matter where it strikes – is a problem not many of us really understand. It can sometimes be dismissed and not effectively managed by health care professionals. Pain is widespread, but underdiagnosed and undertreated, according to a…

116 Million Americans Suffer Chronic Pain, Huge Personal And Economic Burden
Medical News Today – Christian Nordqvist
Not only does chronic pain affect the quality of life of over 116 million Americans, there is a massive economic burden too, estimated to be between $560 and $635 billion each year for the country, researchers from the Committee on Advancing Pain…

Relieving Pain in America: A new report from the Institute of Medicine
Stanford Scope – blog
The past couple of days have been hard. Struggling with work deadlines, I was also trying to comfort my sobbing six-year-old son as he suffered for hours through what seems suspiciously like his first migraine. Hands tied, I could do little except…

The yearly cost of chronic pain is excruciating
msnbc.com – Alina Selyukh
WASHINGTON — Addressing chronic pain, a hard-to-treat yet highly common condition, costs the United States as much as $635 billion a year and requires a much more comprehensive strategy for curbing lost productivity and healthcare…

Chronic Pain: 1/3 of Americans Live With It, According to IOM Report
ABC News – Susan Donaldson James
Cynthia Toussaint has reframed her life after decades of chronic pain and now helps others. For a decade after a 1982 ballet injury, Cynthia Toussaint was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life. Crippled by an array of illnesses, including chronic fatigue syndrome and fibromyalgia, the North Hollywood, Calif., singer and dancer was eventually diagnosed with Complex Regional Pain Syndrome…

Chronic Pain Costs Have Skyrocketed, Report Says
ThirdAge – Emily Jacobson
Chronic pain costs the United States up to $635 billion a year, and a new government report suggests it requires a much more comprehensive strategy to make up for productivity and healthcare costs. About one in four US adults have chronic pain each…

(Thanks to Mary Bennett, APF, for the news links.)

The Institutes of Medicine’s (IOM) full Relieving Pain in America report can be downloaded for free at http://www.iom.com/relievingpain.

© 2011 Intractable Pain Journal & Heather Grace. All rights reserved.

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