Your Voice Matters – Make Chronic Pain Visible

Your Voice Matters – Make Chronic Pain Visible

WHY WOULD TELLING MY STORY AND SENDING A LETTER MAKE A DIFFERENCE?

The National Fibromyalgia & Chronic Pain Association and pain patient organizations were recently asked to reach out to people with pain and their families directly to ask about their experiences.

People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to know if you are receiving adequate pain management and relief.

Telling your story can affect their policy decisions and new areas of research.  

There are three ways to tell your story:

(1) upload a personal letter on this website,

(2) answer questions that will automatically create a letter, or

(3) participate in an anonymous survey

Legislators ask “how does this affect my constituents?” Your address is needed by congressional offices to verify you as their consituent. Being as open as possible in your letter to your legislator will help them understand the impact of living with a chronic pain illnesses.

Your letters will be combined with others and hand-delivered to legislators on bi-monthly intervals.

To be effective, we estimate that 10,000 responses are needed to be representative of how chronic pain affects people’s lives in the United States

Please ask others you know to help in this major initiative.    

Does chronic pain illness affect your life on a daily, weekly or monthly basis? If so, how? Below are things to consider when telling your story.

  1. Are you having a hard time getting through your day because pain stops you? If so, how?
  2. Are you unable to work productively or to the level you’d like? If so, how?
  3. Are you avoiding medical appointments due to expense? If so, how?
  4. Can you get appropriate medications or treatments for pain relief? Has that access changed over time? If so, how?
  5. What obstacles prevent you from finding appropriate access to pain care, if any?
  6. Have you disclosed your full diagnosis or experience with your chronic pain illness with those around you? If so, who (friends, family, co-workers, boss, etc.)? If not, why?
  7. Has your chronic pain illness affected your ability to work or your productivity? If so, how?
  8. Has your chronic pain illness affected your education or career goals? If so, how?
  9. Does chronic pain limit the activities you love most? If so, how?
  10. Are you unable to participate in family or social activities? If so, how?
  11. Are you hiding anxiety or feeling depressed about what the future holds with a chronic pain condition? If so, how?
  12. Are you experiencing suicidal thoughts from fear or exhaustion in dealing with constant pain? If so, how?
  13. Are you feeling that you have to defend your actions in seeking pain relief? If so, how?
  14. What led you to seek a diagnosis, and what led a clinician to diagnose you? Were there any hurdles in achieving a diagnosis? If so, what?
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9 thoughts on “Your Voice Matters – Make Chronic Pain Visible

  1. Kathy C

    I am not comfortable anymore writing my Legislator or anything like that. Only my closest people know anything my pain issues. My State has an “Opiate Epidemic” and the constant Media sensationalism has led to a nightmare. They cut funding to any of the few Addiction Treatment Places they had. It was more profitable to put people in jail. Because of the Hysteria, i am even afraid they will target my Doctor next. We no longer have any “Free Speech” or exception of improvement.
    I just read another article about older women committing suicide in Colorado. At least half of them had Chronic Pain, yet they cover it as a drug problem, not a healthcare access problem. There are a lot of people that this country considers disposable. I realize I was really stupid to think any of our Politicians care about much of anything. Every day I see people in Pain, many have been told they should pray it away. We are in a new Era, with Wellness instead of healthcare. It is our fault we are in pain, we are just not positive enough. Even putting on a brave face and smiling through the pain, is now reason for suspicion.
    I use dot have an Idea that there would be progress, as technology improved our lives they would come up with a Cure or a new Surgical technique or something. Instead we are seeing less “Research” and more snake oil peddled to the masses. In spite of those Science Articles, with the “Breakthroughs” there is actually less ability by Doctors to recognize pain. They have found a way to deny healthcare to millions of people, because “They don’t recognize pain.”
    This was a clever propaganda trick,, a way to avoid liability and increase profits for the big Industries that sell the For Profit Healthcare.
    If a patient doesn’t have the right Insurance they just don’t get treated. They have Gas Lighted us all, the lie that it is all in our heads or some other nonsense, has led people to suicide. Mentioning anything about pain only leads to misguided advice they got from TV Shows, the Web or their friends. The Corporate media narrative is repeated word for word, at the Doctors Office or by random misinformed people..

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    1. david becker

      I think writing letters does make some difference-but letters form people in pain are not enough to compete with the prejudices of the health care industry. Letters to leaders in the health care industry makes more sense to me. But in this regard people are competing with expert opinion-and so some experts will yield to people- most wont. But lettters from people incur a cost and i believe costs drive health care and professionals- so th emore letters sent- the more costly it is for health care industry to maintain their position on pain care.
      But people who send letters are not barred from protests, organizing institutionalizing etc.
      So whilst letter in and of themselves are not sufficient to change pain care- no one is precluded from just sending letters to effect change in pain care.

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      1. Kathy C

        One of the ways they undermined the Pain and other Patients Advocacy or rights groups was the “Tell your Story” narrative. The used the same Anecdotal approach in Media too. It sounded great, “telling the story.” This might have worked if anyone reading the story already had a background of knowledge about the issues, or had accesses to data, numbers and statistics to put it in perspective. Instead the current narrative negates any insight an Individual Story might illustrate.

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        1. david becker

          I think “tell the story” lead to people in pain being perceived as dependent, emotional, needy, burdensome noncontributing members of society. Too many plead like serfs without rights or without a real solution to the problems in pain care. Their impression management was poor-bit a real reflection on how government and the marketplace failed to empower the many in pain.
          There were others from ngo’s who more or less called for more money and more professionalism in pain care- which i think missed the mark as well for it called for more money-and mostly more of the same.
          People need to call for a little revolution in pain care- market fundamentalism and government regulation was and is a failure. Pain care should be mutuualized and people in pain need to be empowered and part of the solution and not just seen as needy dependent and emotinal. People in pain need to become co-produers of pain care. Failing that they will be subject to the designs of the marketplace and government and subservient.

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          1. Kathy C

            True, It is very possible that many people who are still working have gone silent. We have no way of knowing when or if this kind of information will be used. Even those that don’t take prescribed Pain medications could be seen as weak or pathetic. The perception of any medication usage is also dangerous. In this climate the fact that on even used opiates after surgery is something to keep silent about. Even people that appear reasonable have some crazy ideas. This knowledge can be blown out of proportion for any reason, and an excuse for firing, false allegations, and general problems. We are not safe. This may be part of the reason things have gotten to this point.
            The only Politician I have heard of using any kind of medication is Texas governor Rick Perry, the only reason I know is due to a Business Article about his “Stem Cell Clinic” They were Advertising it and mentioned he had to taken pain Medication. They were looking for Investors and hawking his business. . This clinic sounded very sketchy and they have since moved to Mexico. I cant , think of many other people that are in the public eye, that admit it. If they have it is past tense unless they admit they were addicted, then they are treated like royalty for overcoming addiction. A few B-List people, like Paula Abdul, a former dancer, who acted strange on TV. There are not a lot of people who can ever mention it, it could ruin their lives. Whether it is the perception of weakness or the medication angle there is a culture of secrecy. Both form the people with pain and their Physicians, it is just safer to stay out of the Public eye.

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            1. david becker

              Your comments reflect pathos and logos but no ethos. They make no way for a better future for people in pain and are a dead end a hopeless viscious circle. And I fail to see the good you are promoting as you fail to offer any hope for change. I have had many battles with the powers that be in pain care- and lost a great many- but i won a few key victories and i have lost the ability to dream or to try to make my dreams of a better future for people in pain a reality. But it sounds like you have forgotten how to hope or dream.

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            2. Kathy C

              Thee is not much hope out there. I had hope for 2 decades, and things have only gotten worse. The Headlines in today’s paper are full of despair. Foster kids, drug addicts and misguided Policies, Self serving “helpers,” the same old narrative. This is going to get worse. I have moved to the Mountains so I don’t have to see it yet it is out here too. I used to get involved and try to help, that did not work out so well. Due to my Pain issues I did not join any “Groups” it is hard to commit time. I was not looking for work seriously either so it never occurred to me that I should Advertise every good deed on Facebook.
              I have watched a lot of good people die in the last decade. I was too chicken to even comfort them in their last days. I see the same ignorant and misguided thing repeat, with no improvement no progress. I spend time with my dog, and nature to avoid it all.

              Liked by 1 person

      2. Zyp Czyk Post author

        I think that writing letters to “outsiders” is far more productive than writing only for fellow pain sufferers… as I do.

        I’m embarrassed to admit that I haven’t written a single letter to a legislator because I lack the courage to confront those that don’t agree with me (cowardice is one of my most troublesome weaknesses).

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