The National Center for Health Statistics reports that over 76 million people live with pain. I was reminded recently that we must not just think of this huge number but of the individuals that comprise it. I met a woman who is living with disabling pain, trying to cope and support herself, even though the Social Security Administration has informed her that she does not qualify for disability insurance; she isn’t in enough pain. We spoke for a few minutes and I was reminded that each of us is experiencing pain in a different way, facing life’s barriers and coping with the impact pain can have on our work, relationships, finances, mobility, and emotions as best we can, while few around us can even begin to realize the challenges we face.
The first time I heard the number of people reported to be living in pain I was amazed, and I wondered how these people were all coping. Were they working or on disability? Were they seeing pain specialists? Was their pain being effectively treated? Have they ever had the experience in which a medical professional doubted their pain, or the intensity of their pain, and accused them of being a drug seeker? I wished I could know more about the individuals who make up the 76 million people the Center refers to, but obviously I can’t.
A few weeks after learning about this huge number of people living with pain, I attended a conference for volunteers in the Power Over Pain Action Network (POPAN), a grassroots project of the American Pain Foundation (APF). I had recently been accepted as a volunteer spokesperson by the Foundation and this was the first time I was going to meet other volunteers and staff of POPAN; I looked forward to learning more about the educational and advocacy work I would be doing. I knew that most of the volunteers were people living with pain and I was interested to see how they were all coping on a day-to-day basis. I’ve lived with pain for over 45 years and while I mostly cope pretty well, there are still some days on which I feel as though I am not coping at all. I volunteered for this work because I believe that others can benefit from the experiences I have had in relation to my chronic pain over the years, both good and bad.
What I didn’t stop and think about is that since each of us is very different in so many ways we will naturally react to our pain differently, and often uniquely. At the conference I met people who have lived with pain for many years and deal with it in ways I would never have thought of. Some feel comfortable saying they must lie down in the middle of a seminar, while others would rather bleed from their very pores than ‘make a scene’ and lay down on the floor. Others are taking strong pain medication, which is the only treatment that gives them relief, while others have doctors who refuse to accept their pain is that bad and won’t prescribe medication. And still others have nerve stimulators, morphine pumps, and other more recent methods for treating pain; methods that some doctors don’t even know can be used for this. The lack of knowledge by some medical professionals about the physiology of pain and the impact it can have on a person’s life is appalling and the more I heard the more determined I became to help bring about change.

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Denise,
Thank you for all you do for the cause of Chronic Pain. I capitalize it because of its importance. I belong to the American Pain Foundation and advocate as I can, sending emails to our government officials. I have presented my request to volunteer and have never been contacted. I advocate unofficially at several pain sites and moderate a large pain group on yahoo.
There can never be too much done to get our message out to the powers that be.
Huggles,
Annie
hi! i also requested ways to volunteer..posters, ways i can get my community involved etc. from the APF, but was not contacted either, i would have gladly , "walked " (oh the pain:) around town to put up posters, or other ways, i was able to help! wish someone would have contacted me....may i ask what pain group you are on w/ yahoo?..keep up the good fight!....cindi
Hi Annie,
I am happy to hear you are doing what you can to get the word out about chronic pain, as you say it is an important task that must be done. I am sorry that you have not heard back from the American Pain Foundation, I have fortunately had a wonderful experience with them. Have you taken the Advocacy Survey available on the APF website? This is part of the process of becoming a Power Over Pain Action Network (POPAN) volunteer, and I believe it is how a contact would be generated, but I am going to check.
I have been a POPAN volunteer since last April and have found it to be very interesting and fulfilling. So far I have written to federal legislators in support of the National Pain Care Policy Act, sent written testimony to the FDA regarding policies they were considering, given a presentation at a conference for pain patients, been interviewed by two reporters, been a guest on a web based talk show, www.letstalkpain.org/talkshow, and have recruited a volunteer to work with me. I also attended the national conference in Minneapolis last June, and had the honor of meeting many dedicated volunteers and staff. I am currently working on putting together an educational program for pain patients, writing letters to editors of newspapers, and setting up interviews with federal representatives and directors of pain clinics.
This may sound like a lot but I want to stress that it has taken place over several months and much of it is scheduling for future activities, plus I couldn't do it without the help of a volunteer. My point is there is so much to do and whatever each of us does adds up to make a difference, and together we already have made a difference.
Several members of POPAN gave personal testimony at two different FDA hearings and feel confident that there words and experiences made a difference in how the committee voted on at least one issue, making it possible for people in pain to continue getting prescriptions for certain medications that are the most effective for chronic pain.
I hope you will continue working on behalf of people living with pain and helping to spread the word about the impact chronic pain has on over 70 million lives in this country. I am going to speak with my contact at the Foundation and have someone contact you about becoming a volunteer. It may take a little while because I know she just started a two week vacation.
Thanks from one of the 70+ million.
Denise
Hi,
I am a volunteer with the Power Over Pain Action Network (POPAN), a grassroots program of the American Pain Foundation. I am very sorry you have not heard back from APF, and I am surprised as well since my experience with the staff of the Foundation has been wonderful. I will look into what happened, but as I mentioned in my reply to Annie the staff member that is my contact at the APF just began a two week, well deserved, vacation, so you will not hear back until she returns and reads her email.
Did you fill out the Advocacy Survey on the APF website. My understanding is that this generates contact from a staff member, but if you wrote a letter you should have received some kind of response. I cannot give you any explanation but will try to find out what happened.
We definitely need as many people as possible helping to inform others about the impact chronic pain has on the lives of those living with it, as well as to advocate for laws and policies that will benefit people in pain.
Please let me know if you hear from anyone at the APF in the next 2 or 3 weeks. I want to make sure you remain interested and have the support and resources necessary to make a difference.
Thank you for your interest and for contacting me. Together we can conquer pain!
Denise
Thank you Denise. I understand everyone is busy and did not intend for this to sound like a complaint
. I look forward to hearing from whoever can help me.
Huggles,
Annie
...thank you, denise, i DO so want to do as much as i possibly can!!..cindi
hi annie! your post did NOT sound as a complaint, but as a person who is very interested in helping the 70+ million ( a staggering number, is it not??!!) people that are in pain, i , myself commend you for wanting to help in any way you can!!...we , so need more people that are interested and are able to do what they can...so I thank you, for your interest...even tho i am just a peon,:), trying to do what i can possibly do!..keep up the good fight!...cindi...
When is enough enough? Why put the person through a lot of pain? Wouldn't they rather go be with God where there is no suffereing anymore?
Thank you Cindi
Annie