Tag Archives: advocacy

50 Resources to Help You with Chronic Pain

From A to U, here are 50 organizations you can go to for information, help and resources to help you manage the challenges of living with chronic pain.

This might be the most complete list I’ve found, with listings for the science-minded, like Chronic Pain Research Alliance (www.chronicpainresearch.org), to the humerus (for young people) Stupid Cancer Association (www.stupidcancer.org)


Advocacy Against CDC Guidelines

This advocacy advice comes from Richard Lawhern, a tireless advocate for pain patients. He was a headline speaker at the “Stop the War on Chronic Pain Patients” rally in Wash DC last fall (See Making Ourselves Heard) and has personally contacted both journalists and legislators to fight the flood of anti-opioid articles and legislation.

I thought I would share some tactics that may help others be more effective in this kind of advocacy.  Some of this is things I’ve heard. Some is what I’ve experienced myself.

  1. Physically visiting your own Senator’s office with an appointment to see a staff member by name is the most effective lobbying you can do without a checkbook and deep pockets.  Senator’s constituents will always get priority over a non-resident. Continue reading

Take a Stand for People Living with Chronic Pain


People with pain are misunderstood, inadequately treated, stigmatized and marginalized on a daily basis and are forgotten about.

Join People with Pain Matter and take action by advocating for nearly 100 million Americans afflicted with chronic pain.

This site offers a form into which you can write your story. The organization will then route it to all the people and places where it can do some good. Continue reading

Vilified and Coerced, Pain Patients are Desperate

Vilified and Coerced, Pain Patients are Desperate 

In no other medical field are patients subject to such vilification, suspicion, and coercion as in pain management.  Chronic pain patients have been abandoned in the blind rush to “protect” us from addiction to opioids, without concern for their legitimate use as pain relievers of last resort.

Those of us that require opiate medication for pain are treated like criminals.  We must sign away our privacy and allow our medical records to be scrutinized by law enforcement, the DEA, or any third party private contractor working as a “drug warrior”.  If we don’t sign, we don’t get treatment–this is blatant coercion.

Already struggling to make life worthwhile in my painfully broken body, I must now face additional hardship, expense, and obstacles legislated by my government.

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Simplistic Solutions to Complex Social Problems

Our culture seems to believe that simplistic moral solutions can solve complex social problems.  

Applied to the problem of addiction to pain-relieving opioids, the response looks like this:

  1. Identify the “bad thing” (opioid drugs),
  2. declare war on it (War on Drugs),
  3. initiate a media campaign of misinformation (propaganda),
  4. take enforcement action (DEA raids),
  5. over-prosecute a few high profile cases (CVS, Walgreen’s, Pain Doctors),
  6. scare everyone else (legal threats), and
  7. then spend millions of our tax dollars (enforcement)
  8. forever (War on Drugs is still being fought after 30 years).

This creates a bureaucratic monster:  Continue reading

Pushed Beyond Hope

Warning: This is a very angry essay about how the campaign against opioids could push someone to suicide.

I used to think I was the only one wrestling with these thoughts until I lately discovered other like-minded folks. I wasn’t sure whether to post it, but then I saw a question on the Inspire.com Pain and Pain Management forum about this very idea, and this is my answer:

Pushed Beyond Hope

Over the last few months, the accumulation of forces against opioid prescribing has pushed me over an edge, pushed me past my sense of self-preservation and into a fundamental shift of my expectations of life.   Continue reading

Harm from Opioids or Harm from Chronic Pain?

There’s been so much talk about the downside of opioids, but hardly anyone mentions that letting pain persist does damage as well. Chronic pain is stressful and debilitating, it keeps our bodies and nervous systems in a constant state of exhausted alarm.

Chronic pain is an invisible festering wound.

I’ve struggled with pain and pain relief for decades. I learned long ago, after much trial and mostly error, that opioids were the only means by which I can control my pain enough to make my life bearable.

When taken as directed, these medications do not make you numb or completely pain-free, and they certainly don’t get you “high” when taken for pain. They merely dull the pain enough to be tolerated. It’s not an ideal solution by far, but in many cases it’s the best alternative currently available.

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Helpless Rage

I’m growing more and more furious that the same old erroneous, disproven, and terribly stigmatizing beliefs about opioids/opiates are still being propagated in the media. Instead of being countered by intelligent people who know better, these falsehoods are only growing in influence. Even highly educated people, including medical personnel, are spouting these same damaging notions as facts, just because they have become culturally trendy.

Everyone is jumping on the opio-phobic bandwagon, competing to be the hardest on anyone using opioids for any reason. It’s a disgusting situation, creating an invincibly powerful societal meme of the “innocent pain medication user who is sucked into addiction” against their will by taking just a few prescribed pills to relieve overwhelming pain.

Thanks to the factually corrupt and omnipresent media feeding frenzy, patients are afraid to ask for pain relief and doctors are afraid to provide it. The situation is impervious to facts or reason and has evolved into a witch hunt destined to ferret out all pain patients and take away our medication.

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Media Hype About Opioids

To The Media:

Ever since you started writing about the “Opioid Crisis in America”, you have ignored the millions of us that suffer with serious and incurable, but treatable, pain. You have ignored scientific facts and stubbornly continue to confuse chronic pain treatment with addiction.

You present the horrors of addiction and overdose as inevitable consequence of any opioid use, and fail to distinguish between supervised medical use and recreational use.

You rely on the opinions of self-declared experts as truth, brushing aside inconvenient facts:

  1. Less than 5% of legitimate pain patients become addicted**.
  2. Most opioid overdoses are not from an opioid alone, but from a combination of drugs that enhance the effects of the opioid, like alcohol or tranquilizers.
  3. The vast majority who use illegal drugs and get addicted eventually stop without any help or drama.

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The Shame of Chronic Illness

When I recently read the phrase, “I’m embarrassed to be sick”, it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people-–especially those that knew me before I became chronically ill.

At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos Syndrome, a genetic flaw which leads to defective connective tissues. This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.

I am ashamed of being sick. I spent my previous life trying to prove how tough I was, declared my independence early, made my own way successfully… and now I’ve lost it all.  Continue reading