occupy
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 despite having the means to relieve it. The message implicit in the new policies is that our pain, our suffering, our very existence, is irrelevant to the rest of society.
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Until she was disabled by chronic pain from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika Byczkowski was a high-tech IT maven at Apple and Yahoo. She lives in a cabin in the redwood forests of the Santa Cruz Mountains in California with her husband and four-legged kids. Her essays have been published on several healthcare blogs, including Stanford’s Scope, Kevin MD, Occupy Healthcare and Substance.com. Her informational blog is at EDSinfo.wordpress.com.