Painkiller Paranoia: The Stigma of Opioid Use Among Chronically Ill Patients
Examining the fear behind proper opoid useage and what it really means to be chronically ill and using pain medication.
I hear it constantly: “Don’t you get addicted if you take them for so long?” “Aren’t you dependent on them now?” “That can’t be good for you!” “If you just stopped the drugs you would feel better!” “You have opioid induced pain!” “You don’t look like you’re in enough pain to be using those types of medicines!”
I’ve heard it from friends, family, and even doctors. The common bottom line? Painkillers are the enemy. Addiction is inevitable. Pain must be visible to be legitimate and validated. The Pain Killer Stigma.
But this bottom line is just a misconception— a common misconception at that.
Pain killers do not have to be the enemy. When I first got sick, I was already using pain killers (specifically Vicodin) for my spine. By “using” I mean taking as needed, not regularly. I repeat, not regularly. Meaning if I didn’t need that strong a medication, I took Tylenol. For any other type of ache or pain? I took an OTC medication. Just because one is given a prescription for an opioid-type medication does not mean that they will or have to rely on that medication alone to combat every type of pain. Chronically ill patients that do have to take these medications regularly are given specific instructions to follow and are not flying blind, so to speak.
Most often, these chronically ill patients are under the care of a rheumatologist, a neurologist, an immunologist, a gastroenterologist, countless other specialists. They receive their controlled medication from one doctor, one pharmacy, and discuss both the risks and benefits of using these medications both in the short and long term.
Originally my pain killers were being prescribed by my spine surgeon, who sat me down and discussed appropriate pain killer dosage and use extensively with me. A good physician will not just give a first time patient a prescription for a heavy opioid and walk out of the room. A great physician will focus on pain from a mind and body standpoint and often refer patients to a pain management clinic (read: I do not mean a Pain Clinic in your local shopping center notorious for writing prescriptions and that’s it), where a doctor who specializes in fighting chronic pain will employ other methods in addition to your medication. A comprehensive plan of attack for alleviating pain is key.
Addiction is by no means inevitable. Physical dependency may occur in the sense that you might feel the effects of coming off such a heavy medication, but this does not necessarily indicate over use. I have taken the same dose of oxycodone for three years now and because I have wonderful physicians and am a responsible patient, I have no problems.
What does it mean to be a responsible patient? It means to be aware. If you have a history of addiction in your family or your own medical history, you need to express this to your physician. If you have concerns, you need to voice them. If you do not need to use the medication on a good day, then don’t. If you feel yourself desiring the medication when you are not in pain, immediately contact your doctors. Do not share your pain killers with others (cannot stress this enough). Addiction is by no means inevitable so long as you are in legitimate pain and you are a responsible patient.
It is true that long term use of opioid medication can create problems with the liver and can cause complex migraines. So what is to be done? This is where the patient-doctor relationship comes into play. Your doctor should be monitoring your liver enzymes frequently, having discussions about your medication usage and pain levels at every appointment, and if you have concerns it is important that you voice them. Your doctor should also recognize that opioid medication is not the solution for everyone. You should know that too. Chronic pain is never a one size fits all kind of deal — something that only the chronically ill truly understand.
But how do I deal with my family? They don’t understand!
Communication. I once sought out a second opinion for my spine and the surgeon not only told me that my back problems did not exist, but that I was addicted to my pain killers and the over use was creating a condition called Opioid-induced pain. My mum believed him despite anything I had to say and they took me off pain killers that afternoon. Needless to say, my pain only worsened and I clearly had no issues stopping them. There was no withdrawal and there was also no relief. I was never addicted, the surgeon was an idiot, but I lost a lot of confidence and trust in my family for a long time after that.
It’s so important to explain to your family/friends what it means to use opioid medication properly. Take them to an appointment with you and let them voice their concerns to your doctor! Explain to them how the medication helps you and how you are instructed to take it. Let them ask your pharmacist questions about how to safely use pain medication. The painkiller paranoia usually comes down to not understanding chronic pain and proper usage, and really, it is no surprise that patients and their loved ones are paranoid when doctors and pharmacists are on high alert for drug seekers.
Think about it: what do you hear about pain killers on the news? Do you hear about chronically ill patients properly using them for relief? No, you hear about the latest drug bust at a local pain clinic and the new federal laws being enacted to lower the rate of prescription drug abuse in our country. These laws are absolutely necessary and the importance of taking these drugs seriously should most definitely be stressed to patients, but what those outrageous pain clinics and drug seeking patients do is instill a fear associated with all opioids, as well as a suspicion among doctors and pharmacists of the chronically ill.
How many times have you had to fight to be taken seriously and allowed to find relief through medication? Especially with an invisible illness! You cannot always see the consequences of immeasurable pain, so the chronically ill are often viewed through a “lens of skepticism” (Kevin MD). How many times have one of you followers gone to the E.R or a doctor related to your chronic illness and been suspected of seeking drugs? Just recently my rheumatologist warned me that new opioid regulating laws enacted by Rick Scott (Gov. of Florida) actually put me on the radar for an investigation, considering my age and usage. Granted, nothing will come of it because again, I have a team of doctors, multiple conditions, and I am a responsible patient, but still. The point still stands: the war against opioids and those contributing to that war both directly and indirectly create a stigma associated with pain killers. Some of the legislation creates not just a war against the medication, but a war against the responsible patients who suffering is relieved by them.
It’s a double edged sword and the stigma puts chronically ill patients at a huge disadvantage. Not only does the stigma create feelings of guilt and judgment for the patient, but it also encourages silence and consequentially, more pain and suffering.
The only way I know how to combat the paranoia is to educate and use our voices. The only way the stigma will be overcome is to educate doctors on chronic illness and pain, form strong lines of communication between patients and their physicians. If only our health care system could understand that chronically ill patients are stuck in a catch 22 kind of situation, where in the eyes of the system, talking about their pain makes them a hypochondriac vs. hiding their pain begets the assumption that the pain does not exist. The only conceivable solution I can think of is education. Posts like these will help, along with news coverage of the Pain Killer Stigma and the negative impact it has for patients in ADDITION TO publicity of the latest pain killer clinic bust and the negative impact it has on society. Hopefully with new medical innovation and drug research moving towards non-addictive pain medication will contribute to fight the stigma and paranoia, becoming less invasive in the lives of patients.
So no, addiction is not inevitable. No, you are not a junkie, so let go of that guilt I know so many of you hold onto. No, there is nothing to be afraid of so long as you keep lines of communication open and are responsible, as you should be with any medication, quite frankly. Comprehensive pain management is key. Just because someone has to take pain medication does not mean that they want to. No one wants to be in so much pain. Remember to tell your loved ones that just because one has accepted their pain does not mean that the pain is gone or any less severe.
Speak out about the stigma of chronic pain and pain killer usage, and educate in hopes of taming the rampant pain killer paranoia. I’ll be posting a pain killer comparison resource with specific drug information for those who are interested, or to send to loved ones for a better understanding.
Love & spoons,
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