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.

Pain Patients Vilified

The ultimate goal of the current media-fueled anti-opioid frenzy seems to be zero tolerance. Such simplistic thinking legitimizes only the suffering that results from the abuse of these medications, ignoring the equal suffering that results from their absence.

The media indiscriminately vilifies all opioid use, making the legitimate use for pain a shameful secret for many pain patients. This serves to keep many of us fearfully silent, even as our rights to privacy and proper medical care are trampled.

Devastating consequences for pain patients

We now face increasing suspicion from medical staff (doctors, pharmacists, other health care workers) and condemnation by society (family, friends, co-workers).  Our voices have been drowned out by a relentless media campaign against opioids, spreading uninformed and misguided anti-opioid sentiment.

Those of us who rely on opioids for some remaining quality of life are in despair. We take opioids reluctantly because we must, if we are to retain any quality of life at all. Too often, we are judged to be addicts with suspicious motives, and are forced to defend ourselves against this media-fueled stigma.

Some patients are giving up the fight and succumbing to hopelessness.

The increasing difficulty of getting effective pain relief has inspired a rash of postings on pain patient support forums asking about assisted suicide, with titles like “Death is appealing”. Patients are anticipating the increasing pain they will face as legislation restricts access to opioids, and are contemplating moves to countries and states where assisted suicide is legal.

Some pain patients see no medical hope, and feel they have the right to end their suffering if and when they choose. Some imagine of how happy they’ll be when they can finally get out of pain, for good.

They are tired of waiting, trying, hoping, and feeling lied to. They’ve been through years of going to doctors, submitting themselves to countless tests, scans, and treatments, only to find their pain is essentially permanent: not curable and often without even a known cause.

In some cases, after a lifetime of coping relatively well, a pain patient’s health goes into free fall and pain becomes intractable.  It becomes first difficult, and then impossible, for them to walk, feed themselves, and perform other basic self care. Many had previously enjoyed a good life, but now would rather die with dignity than be a burden to family.

From Lynn Webster, MD, past president of the American Academy of Pain Medicine:

“I’ve had a number a people send me obituaries for people who have not been able to access their medications and decided to kill themselves. So this is not a trivial issue. There are unintended consequences that are occurring. No one wants anybody to commit suicide and no one wants more suffering, but that is occurring.”

Our pain and suffering is deemed irrelevant

In the uninformed and misguided effort to prevent addiction, we pain patients feel that our country and society simply don’t care about our suffering. With our bodies broken and lives derailed by chronic pain, these additional hardships exhaust our inner resources.

Without opioids, many of us will lose our remaining functionality and quality of life. We have been abandoned and shamed, left to suffer permanent pain even though the means to relieve it are accessible. The message implicit in the new policies is that our pain, our suffering, our very existence, is irrelevant to the rest of society.


This essay is even more pertinent now that when it was originally published over a year ago on the “Occupy Healthcare” blog (now inactive):
http://occupyhealthcare.net/2014/11/vilified-coerced-pain-patients-desperate/

 

Advertisements

4 thoughts on “Vilified and Coerced, Pain Patients are Desperate

  1. Ingrid

    Well written and unfortunately so true. It boggles the mind as to why pain patients are so singled out , it is time for pain patients rights nationwide. This has just become ridiculous, but worse yet, dangerous for the patients. It adds so much stress to a situation that is already stressful. I just don’t understand the downright bullying.
    As an aside I just read the Newsweek article “The Junkie with the White Picket Fence” again no mention of legitimate pain patients (Jan. 1-8 issue) and it already is quoting the “recent CDC guidelines” as already a done deal and says “While CDC guidelines are not binding, they are oft-cited and widely followed in the medical community.”even. This is the second time I’ve read something to this effect in a widely distributed publication. That is disturbing! They’re not done yet!

    Liked by 1 person

    Reply
  2. abodyofhope

    Reblogged this on aBodyofHope and commented:
    On January 28th, the CDC will meet for a final public hearing at which pain advocates and public citizens will speak out against both the restriction of pain management as well as speak in favor of it.
    Many individuals wrote letters to the CDC begging them to reconsider this guideline. The CDC has been so focused on the addiction crisis in the US that the chronic pain epidemic is not on the public’s radar.
    This excellent post by EDSinfo.wordpress.com expresses the plight of our country’s worst suffering. Please do not look the other way. These words below express what could be your mother, brother, or your child.

    Liked by 1 person

    Reply
  3. seachy

    Here’s hoping sense is seen in a few days time. We recently were subjected to a trial by media in a Panorama show in the UK that showed the addiction to opioids and had the extreme abusers in the show and the issues it was causing their bodies and organs. Two days later at a medical I was asked did you see the programme that said they are in effective do you really need to take your methadone. I was erm “excuse me you have a letter from my consultant detailing the gradual build up of my dose and the needs for it after going through all other options in the last 15 years are you questioning me on the basis of one show that had no balanced view or any details of people who use them as an effective strategy in a multi disciplinary approach to their pain management! I left so angry!

    Liked by 1 person

    Reply

Other thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s