We as a society of sentient, compassionate, empathetic creatures, all the traits present in social beings which allow us to perpetuate our species, and especially those medical profession, need to get rid of this idea that people with chronic pain are better off left to struggle in pain than to allow the risk of them potentially becoming addicted to medications that alleviate pain. If these same medical professionals had a life partner or child in pain, their patient/loved one would not be want for pain management. Further, the majority of doctors and nurses deal with chronic pain patients almost daily, yet they seem utterly incapable of even trying to understand what chronic pain does to a person over time. Far too many have the bedside manner of what I imagine a soulless person would exhibit. Devoid of emotion, empathy, sympathy, or even logic (ie “Is my job not to help this person who is clearly in pain, or is it my job to invalidate my patient’s pleas for help and send them away without even attempting to give them some relief?”)
Chronic pain is like a living death; it takes away all you ever had, and all you ever will be. Chronic pain wears the patient down to the point where suicide often seems the only viable solution. Many chronic pain patients eventually turn to alcohol, dangerous attempts at self-medicating, or narcotics bought off the street, to help themselves cope with their constant agony. This last effectively turns the chronic pain patient into a criminal and they risk jail time, destroying their futures and their families in the process. What would an alien species or a god think of a society that criminalizes it’s weakest members? A society that takes away the voice and the ability to cope from its members who have absolutely no control over their diseases? These are not viable options for pain management. Period. By forcing a chronic pain patient to resort to these methods is cruel and invalidating of their suffering, and a direct violation of the Hippocratic Oath to do no harm. The Oath does state that a doctor will never give a patient a deadly drug. Narcotics could be construed as a deadly drug if an overdose results. However, this is a moot point because doctors give patients deadly drugs all the time. Consider chemotherapy and radiation treatments. This is the way we have treated cancer for decades; doctors poison our bodies in a gamble that our bodies will outlast the cancer treatments. That reasoning is cancer treatment at its most basic level. After all, is radiation exposure not deadly? Doctors often leave their patients sterile or with horrible side effects like radiation cystitis, which is an incredibly painful, chronic inflammation of the bladder as a direct result of using radiation therapy to force bladder cancer into remission. Doctors the most powerful neurotoxin known to Humankind daily. Botox, aka botulinum toxin. At first, this toxin was used for cosmetic reasons, to reduce wrinkles on the face. Now the medical profession uses Botox for any number of ailments including, but not limited to, chronic migraines and Painful Bladder Syndrome/Interstitial Cystitis. Many ethnic peoples in the days before high tech weaponry was so readily available would coat the business end of a spear, dart, or arrow with fecal matter to ensure fatality in the victim regardless of where the weapon punctured the skin. Eventually, the unlucky recipient would die of septic shock. Now we transplant “healthy” fecal matter into recipients with complicated GI tract infections in order to balance out the good bacteria vs. the bad bacteria.
Chronic pain costs men and women their jobs, sometimes careers they spent years meticulously building. Sometimes it forces children out of school because they’re just too sick to go to class. This is particularly horrific because it causes the patient to lose his or her health insurance, leaving them broke and without the ability to finance crucial medical care and medications, and it sets back a child’s learning progress substantially thereby threatening their future as a healthy, productive adult capable of supporting him or her self, and maybe a future family. Chronic pain makes it next to impossible to sleep, effectively adding to the patient’s depression, and weakens the immune system drastically. We know for a fact that chronic lack of sufficient sleep increases the sufferer’s risk of accidents, obesity, sex drive, and even shortens life span.
Chronic pain causes families to fall apart. Mothers and fathers alike have lost custody of their children because they’ve not only become unbearable to be around, but also because they can barely care for themselves let alone a child or children. This causes harm to every member of the household because when one family member has a disease, the entire family has the disease. No adult wants to look back on his childhood and remember his mother constantly in bed or the hospital, too weak to participate in family outings and activities.
Many people believe that suicide is a selfish act and that the victim did not consider those who cared for and loved that person. But we now know, based on solid science, that suicide is, ironically, a survival mechanism. We all have a suicide switch hard wired into our deep, primal brains. The switch gets thrown when the patient has run out of ways to cope with pain. Furthermore, oftentimes the health care a chronically ill patient receives can be torturous, especially when the diseases forces her to the emergency room on a regular basis, where doctors and nurses are not only woefully ill-equipped to deal, professionally, competently, and compassionately, with chronic illness and pain, but are also prone to acts of cruelty such as writing “FF” in a chronically ill patient’s file. FF stands for frequent flyer and it is a cruel and heartless invalidation of a patient’s genuine suffering. These invalidating notes, usually written in haste and without regard to future consequences to the patient, are cumulative because all emergency room reports are forwarded to the patient’s family doctor. Every time that patient moves to a new region, and IF s/he even manages to find a family doctor, those notations give the new doctor or specialist the impression that this patient is just looking for drugs. Well of course we are, of course we’re looking for drugs. We’re looking for something, ANYTHING, that will provide us with some relief from the pain with which we’ve been plagued sometimes for decades. We would rather have a cure, or an effective treatment, but since that is not an option for us, then yes, we do want drugs. Powerful ones. If someone came up to you once a day and stabbed you with a sharp pencil, you would find a way to make that person stop hurting you so that you could continue to live your life without fear and pain. We, the chronically ill, the chronically in pain, agony even, we don’t have that option. We cannot fight what we cannot see.
Mother Theresa ran an entire hospital for the poorest of the poor to receive much needed medical care. Theresa was not a poor woman herself. Through her family’s money and through grants and offers of support and supplies from other organizations and facilities, she had every opportunity to make pain management available to her patients. But because she believed that pain purified the soul and brought the patient closer to God, Mother Theresa’s hospital was a bad place to be if you were in severe, often end stage or visceral, terminal pain. Many of her patients died very bad deaths; screaming for days, weeks, even months on end while their families looked on helplessly. Theresa could have, at any time, given these people the relief they so desperately needed. Instead, she chose to let them die in agony, she let them die horrible deaths because of her own belief that pain purified the soul.
Sometimes we do things because we believe we are helping others. We do things that we truly believe are in another person’s best interests without ever actually asking that person, “Is this what you want me to do? Are my actions and decisions helping you or hurting you? What can I do differently to better help you cope?” Unfortunately, we don’t always understand, nor are we listening to the needs of the person suffering because we have become blinded by our beliefs, by our own judgments. Judgments we have absolutely no right to pass onto another. Judgments we cannot objectively make because we do not know what it is like to have a chronic illness or chronic pain. Judgments influenced by a hardened, indifferent society that views pain as weakness, and those who outwardly exhibit manifestations of suffering, especially in the long term, as weak people. A society that views weak people as dead weight; burdening a system which maintains the stubborn illusion that it is designed to help those willing to help themselves. Ironic, because doctors strongly advise against self-medicating, or even doing something as reckless and dangerous as giving birth in the familiarity and quiet comfort of one’s own home. This is the same profession that would perform some of the earliest forms of autopsy and then go perform surgery or deliver an infant, without ever having washed his hands in between procedures.
Doctors today have done far more harm than good by refusing patients adequate pain management. The loss of employment and the inevitable downward spiral into penury; the resultant burden on healthy tax payers to pick up the slack; the need to become a criminal just for a couple hours of pain relief; the destruction and dissolution of families; and finally, the loss of any quality of life and the destruction of the patient’s abilities to cope are far greater harms than providing those who are suffering unfathomable pain every day of what miserable pittance is left of their lives once chronic illness and pain makes itself at home inside the human body.
For a doctor to refuse to prescribe narcotics because of the “potential risk of addiction” is beyond ridiculous, highly illogical, and completely unfounded. A doctor has no right to make that kind of pre-judgement. That’s like saying all women must be confined under lock and key every day between 1800 and 0000 hours, completely segregated from all males with whom she knows, even if only in passing acquaintance, because the bulk of rapes occur with a non-stranger between those hours. Or slaughtering every porcine and avian species in existence to prevent a potentially catastrophic influenza pandemic. What that doctor IS legally required to do is make sure that every patient is as comfortable as possible until his or her disease has been effectively treated or cured. A doctor had absolutely no rights or grounds to classify chronic pain sufferers in the same category as addicts. As chronic pain sufferers, we do have a problem, but that problem is not addiction, it’s having a disease for which there is no known cure or effective treatment. Nor did addicts choose to be addicts. I challenge you to find a 12 year old child who wants to grow up to become a junkie. I further challenge you to find a young adult desperate to develop a debilitating, crippling, painful injury or disease that will permanently disable him or her for the rest of their lives.
Here are a few truths:
-no child dreams of growing up to be a prostitute
-no child yearns for the day when s/he is finally old enough to vein bang their first hit of heroin
-no one prays to get into a vehicular accident, especially one caused by another driver who may or may not be under the influence while driving, and end up paralyzed either from the waist or neck down
-no young adult dreams of signing the papers and getting the keys to his first cardboard box, just down the block from a soup kitchen
-no one, anywhere, ever, wishes to be “blessed” with chronic illness and pain that will effectively obliterate any chance at all at a normal life
-no one wants to watch her family, friends, neighbours, and people in general lead happy and full lives while she is effectively bedridden in agony with no hope, with dark, dark thoughts, praying for death as much as she prays for a cure
-no one wants to spend endless nights lying awake in bed, in the dark, in agony, tears streaming down her face because she is literally too tired to cry, in pain that is on par with many end stage cancers
-no one wants to be labelled a junkie by his or her doctor just because the pain is unbearable but the doctor is certain that this patient is either exaggerating or lying just to get more pills
-no one wants to rely on pills to live. Ever.
As children, we all had grand plans for ourselves because we’d been told for years that we can be whatever we want as long as we work hard enough to achieve our goals and live out our dreams. If we fail, it is because we didn’t try hard enough. Most of us now have realized that this is not the case, not even close. College and especially university are obscenely expensive and even if we do manage to get through, we are left with a lifetime of debt with an interest rate on par with a mafia loan shark.
Eventually, and this usually starts in our late teens, we begin to settle. We can’t get into Harvard, so we settle for community college because the mantra has changed from, “You can be anything you want to be.” to “A job is a job, and in this economy, you’re lucky to have one, no matter how little it pays and how minuscule the benefits (including health coverage, dental, eyes, dependents, pre-existing conditions, pre-natal care and maternity leave, drug coverage, and a pension barely a 50th of the way to decent). We dream of a beautiful wedding, a nice house which we will turn into a home, the opportunity to travel and experience the richness and beauty of this rock we call home. Sooner than later, we settle for a generic template wedding for cost reasons; we skip honeymoons because we can’t afford to take the time off work; we don’t travel world because by the time vacation rolls around, we are just too goddamned tired and fed up of working like organic drones just to pay the bills and put food on the table that, in all likelihood, is slowly poisoning us because of the methods with which it was grown, harvested, preserved, raised, slaughtered, perhaps turned into a pre-packaged meal laced with ingredients we can’t pronounce and toxins solely designed to increase shelf life with utter disregard to the effects of the consumer. Then our own governments turn on us and make it an Act of Terrorism to produce our own completely natural food sources on any scale larger than a backyard garden. The tragic irony is that many of the more toxic ingredients in our food sources are making us chronically ill, and then we are denied health care and pain management.
Toxic chemicals in our food is obviously not the only thing making us sick. Sometimes our chronic illnesses and pain stem from a congenital abnormality, a rogue gene just waiting for the right moment to switch on the auto-destruct sequence. Other potential causes are an accident at work, home, play, in any number of methods of travel, a physical attack from another person, a medical treatment gone horribly wrong. Sometimes the origin of the disease is idiopathic; we have no idea what the root cause is. Sometimes the disease is enigmatic, appearing seemingly out of nowhere with symptoms and manifestations that don’t match known illnesses, and are unresponsive to any number of treatments.
Whatever the cause, the result is the same: A person’s life as they knew it will never be the same again, and as the disease and the pain wear on, the patient weakens, slowly, like tiny cracks appearing in the foundation of a building. Sooner or later, the core issue must be fixed or otherwise stabilized before the patient crumbles like a building with a foundation so weakened over time it ultimately collapses in on itself.
What boggles my mind is our government’s refusal to address this issue other than to pass more laws every year that make it harder and harder for chronically suffering patients to receive the help we so desperately need. In 2011, my household paid seventy thousand dollars in taxes, and we did not make a lot of money that year. In fact, between all the deliberately misleading statements of several people who lured us to another province where we were told we would be making $250 000 a year, gross, we ended up as a family of five, and one large dog, with less than $12 000 for the year after taxes, fees, rent, loss of income due to misleading statements by my husband’s new employer, and various other expenses we were not made aware of. And I was left without medical care. That’s $12K, $1000 a month, for gas, groceries, utilities, vehicle maintenance, and ultimately Christmas and birthday expenses for 3 children (who never had a party in Fort Mac because we couldn’t afford it). Pretty far cry from the vast spoils we were promised in exchange for uprooting our entire family to one of Canada’s dirtiest, most toxic, dangerous, corrupt, overcrowded, and expensive cities.
Perhaps the worst of all is that my story, my family’s story, is far from unique. All across North America people are literally dying waiting for health care. They’re suffering in unimaginable, excruciating agony because doctor after doctor after doctor is cold and distant and uninterested in easing a patient’s suffering because that patient “might” become an addict. The health care industry pays a lot of lip service to patient advocacy, yet when we, or our at-home caregiver attempts to advocate for us, we are labelled as belligerent at best and abusive towards the medical profession at worst. Patient advocacy is this era’s “Duck and cover.” Just as a school desk will not protect you from the immediate effects of a nuclear explosion, advocating for our well-being will not get us the medical care and pain management we clearly need. On the contrary. Persistent patient advocacy typically results in that patient being dropped from that particular practise.
It’s time for a change of attitude in the medical industry. It is time for doctors to step back and objectively look at the lesser of each evil. Has a doctor done a patient any good by denying us adequate pain management until our bodies and minds succumb to our suffering until we take matters into our own hands and commit or at least constantly consider suicide? Pray every day for death? I believe the answer is, irrefutably, NO. This is a disservice to patients in chronic pain everywhere. Each time one of us makes the incredibly difficult decision to leave this world, to abandon our families, and take our own lives, that patient’s doctor has done a great disservice to medicine, health care, all chronically ill patients, and humanity in general.
It’s time for doctors to realize that maybe becoming a prescription pain medication addict is a far less evil than forcing us to live with zero quality of life. It’s time to start training new doctors to consider that they get to go home at night and spend time with their families while we go home, climb into bed and lay there with tears streaming down our faces because we literally lack the strength to cry. It is time for the medical industry to understand that narcotic pain management does not automatically turn a chronically ill patient into a junkie but rather, gives us the opportunity to live some semblance of a normal life.
Every human being is born with certain rights. We have the right to be safe and unharmed by other humans. We have the right to equal opportunities for education and training even if our parents collected social benefits. We have the right to be given the same opportunities as anyone else and not denied the chance to become successful, productive members of society solely based on our gender, sexually orientation, socio-economic class, religion or lack thereof, our abilities or being differently-abled compared to what doctors and society view as “normal,” and the colour of our skin. We have made leaps and bounds in these areas, though we know that discrimination still exists on all levels. Yet we remain centuries behind adequate pain management for the chronically ill. And at a time when national, state, provincial, and municipal deficits are higher than they have ever been, why would our governments not do everything in their power to ensure as many citizens as possible are healthy enough to re-enter the workforce if only just to supply the governments with more taxes? Fiscally speaking, it is highly illogical to force the chronically ill and in pain to become prisoners of our own homes when the medications are readily available to send us back into the workforce and increase the amount of tax dollars our leaders take from us, without our permission, each year.
When we are labelled as addicts, the disturbing implication is that we chose to become chronically ill; that somehow we brought this on ourselves and now we must deal with the consequences with no support structure in place. We are often told that we must “envision ourselves as a healthy person” and eventually, it will happen. If this statement had any truth to it whatsoever, the medical industry would not be a necessity. In fact, if we could just think ourselves into good health, the medical industry would be redundant and unnecessary. But it isn’t, because meditating oneself into good health works about as well as those people who claim we can survive on sunlight alone and have no need for nutrition or water. Following this same, invalidating and flawed logic, we could hurl ourselves into the ocean and meditate our bodies into growing gills which take oxygen from the water, allowing us to breathe without the inevitability of drowning.
It is time for doctors to be forced to understand that they are doing far more damaging than any “perceived” good by denying those with chronic illness and pain the chance to regain some quality of life. It is time to think of narcotic pain management as a viable humane, treatment, regardless of the side effects, instead of thinking of us as socially acceptable junkies. After all, doctors have yet to admit that abnormally high numbers of Caesarian sections in North America cost the mother unnecessary expense and risk the life of both mother and child all for the sake of the doctor being able to bill the parents for invasive, dangerous surgery which can have lifelong repercussions for both. Doctors have yet to accept their role in the deaths of teenagers to whom they prescribed the acne medication Accutane before they fully understood the potentiality for an extremely high suicide rate among users. Doctors prescribe medications like Adderall, Ritalyn, Modafinil, and many others to thousands of children every day for “diseases” that did not exist as little as 20-30 years ago. We know these medications to be highly addictive, yet the pharmacies stock them like candy. For children.
When did we become a society where it is more acceptable to turn children into addicts, yet adults, suffering daily with excruciating pain, into hollow shells incapable of holding down the most basic of jobs? When did we become so heartless, so utterly devoid of compassion both among health care professionals and everyday people that the chronically ill are slowly driven toward that alluring opportunity to end our own pain at the cost of a bullet, and our families’ emotional well being? And when did we decide, after millennia of a variety of forms of unfathomable, sick, and cruel torture, that a person who has suffered from chronic illness and pain, from zero quality of life, from continuing to burden ourselves, our families, and the System, that we now cannot even be given the choice to end our pain, to die with the last shreds of dignity and control over our lives we have left? When did we take away a patient’s control of his or her own medical care, decide that torture day in and day out is better than pain management, decide that it is perfectly acceptable to turn children into addicts but let adults suffer agony no living creature should ever experience? When did we decide, as a society, to vilify those who torture animals, yet turn a blind eye to those who torture humans? When did it become acceptable to bombard us with pictures of starving children in Africa, of animals “in desperate need of our help,” but lash out with vicious, cruel, soulless, and inhuman judgments of drug abuse, laziness, an inability to cope with chronic pain and depression without medication as a character trait of weakness and uselessness to the rest of society? When did we start discarding human beings and justifying it with willfully ignorant, untruths about drug abuse and a lack of strength to smile through the pain, even if it goes on for years and ruins countless lives, and yet fly into a global, unified rage, crying injustice and demanding vengeance, demanding that something, anything, must be done when a picture circulates on the Internet of someone who has hunted and killed an animal in a land most of us have probably never even been to?
The wretched lives of the chronically ill, society’s dirtiest secret, are virtually ignored. But shoot a lion and the suddenly whole goddamn planet wants you dead.
It is time for all of us, including and especially the medical profession, to get our priorities straight. It’s time to start treating the suffering, it’s time to shed the misconceptions of why chronically ill patients want, and need, adequate pain relief. It’s time to stop thinking that we’re doing a suffering human being a favour by invalidating their pain and forcing them to endure more.
© 2013 Lelial Thibodeau