This past December, a woman named Jessica Fujimaki died of complications from opioid withdrawal. Her doctor was suspended by the DEA for helping pain patients and she was unable to find another doctor to prescribe her opioids before the lack of adequate and necessary medication killed her. This is a fundamental example of why pain kills.
Photo by Bret Kavanaugh on Unsplash – [ID: Part of hospital bed with pillow and a blue blanket, pills and plastic containers in background.]
How can so many people be dying and it doesn’t make the news? For starters, because of the nature of our condition we often have no energy to properly advocate for ourselves. I have tried to advocate for myself, but even what little I can do is so damn hard. The fact I can’t even post more here is just one example of this struggle.
A lot of addiction-related overdoses that make the news focus on affluent white people who had everything going for them until they had surgery and got addicted. While I’m not saying that can’t ever happen, the real story of addiction is a lot different, but rarely do they make headlines. No one wants to talk about the societal issues behind addiction and fact-based responses. It’s easier to just blame the pills and the doctor that prescribed them.
The unsaid reality is that the stories of a young girl dying of an overdose evokes a tragedy in the public that a chronic pain patient does not. In fact, I would argue that people can’t imagine living with chronic pain and think that maybe dying is for the best. I mean, Canada has come under scrutiny lately for approving euthanasia for their poor disabled citizens as opposed to the benefits that would make their lives far more livable.
Due to opioid-phobia, there are far fewer people willing to advocate for the chronic pain community. People have no idea what our suffering is like, so it’s easy to lecture us about alternative medicine or therapies that don’t work. Yes, our condition is tragic to many, as mentioned above, but still not worth getting decent pain relief. Better dead than an addict, right?
I’m so tired of this. I’m so tired of begging people to care and they just don’t. Meanwhile, the opioid crisis is still framed as a prescription crisis when it is entirely about illicit fentanyl now.
We are being punished for being in pain, and our deaths are entirely forgotten. Because why would anybody care about a poor nobody home-bound and living off disability with no hope of working again?
Better off dead? No. A life worth living. I know because I am still living it.
It is completely normal to become physically dependent on medication and go through withdrawal from its absence. Withdrawal from opioids is most stigmatized, but many drugs cause this unpleasant effect. Anti-depressants come to mind, as well as the everyday cup of coffee.
Withdrawal is, of course, unpleasant and to be avoided when on a drug that causes it. For people on regular prescriptions causing withdrawal, they can fill a prescription early to ensure they do not run out. Not people on opioid prescriptions. You have to be constantly aware of your supply and when you can get a refill. However, nothing ever goes perfectly and something always happens eventually. For me, it was a pharmacy policy I was unaware of because I had recently switched from CVS to Walgreens after having enough of CVS. Walgreens is only marginally better.
A few weeks ago, I went through withdrawal for completely unnecessary reasons. Avoidable reasons. Walgreens deleted the last refill from a previous script when my doctor sent new ones in. I told him I had a refill left and to date it for May not April. I didn’t know that was apparently a big mistake.
Opioids have a different set of rules than other drugs. Limits on refills, and when you can refill them. It is a ridiculous rigamarole that does not save lives. I’ve lost people to the current crisis of illicit fentanyl in heroin. I know what it’s like. None of my family members died getting a hold of legally prescribed tramadol.
These are misguided, outdated, and ass-backward rules that punish those in pain and pretend to help those suffering with addiction. Security theater, that’s all it is.
So when I found out my prescription was deleted and I had no tramadol for April, it was after 4pm on Thursday. My pain clinic is only open Monday to Thursday. I couldn’t contact my doctor until Monday. I had extra pills because I saved some for flares or emergencies, and I assumed I would get my RX fixed on Monday. I didn’t realize my doctor would be out and I had to wait another day.
Inevitably, I ran out.
Withdrawal for me starts like restless leg syndrome, only all over the body. You can’t stop needing to move. It meant that night I only got snippets of sleep, the longest being an hour. It’s exhausting, painful, and disorienting.
The worst of my symptoms were Monday night to Tuesday. Thankfully, my doctor filled the prescription immediately and my mom got it right away. Still, almost 12 hours of withdrawal symptoms took its toll.
I felt like I had exercised too much from the constant tossing and turning. I couldn’t think straight for the whole day afterward. My brain was muddled. The absence of one simple pill caused so much havoc. And, of course, it also meant my regular pain levels were higher, it just wasn’t always so noticeable from the overwhelming withdrawal symptoms.
I’m a pain patient and because of how tramadol is classified, I’m not allowed to get my RX early. But if I had been able to, I could have caught the problem before my pain clinic closed for the weekend. I wasn’t allowed that chance. Instead, we are expected to run up to the end of a prescription before getting another. A problem just has to happen on the weekend to be devastating.
I live with the constant threat that my medication could be taken away and I have to go through withdrawal again. Worse would be the pain I could no longer quell and would restrict my life even more. Doctors will slowly taper you on any other prescription that causes withdrawal, but opioids are the exception because of addiction stigma.
I’m not the first or last patient to be forcibly withdrawn from my medication because of the stigma surrounding it. In all likelihood, something like this will happen again. I’m just fortunate to have my medication back. Too many pain patients are not, and it needs to stop. We must return to a humane way of treating pain.
Furthermore, we expect addicts to go through withdrawal almost as penance for their addiction. Drugs exist to make the symptoms easier, but they are not so easily accessible to those who need them. If the object is to save lives, then easing withdrawal symptoms should be a goal for addiction treatment.
No one should be forced to go through withdrawal or suffer needless pain.
One fact of life that I have learned as I get older is that problems rarely have simple causes and equally simple solutions. When a plane crashes, it’s never just one single cause but a multitude of issues culminating in a crash. The same is true for the opioid crisis. We have seen the same media report claiming that over-prescribing opioids have led to the rise in overdoses and we have tried to restrict our way out of it ever since. Prescriptions for opioids are at an all-time low while overdoses are at an all-time high. Meanwhile, pain patients continue to be forgotten collateral.
Image Source: Anesthesiology. The opioid paradox: Graph showing that prescriptions are declining while opioid overdose deaths are increasing over the past decade.
In early March 2016, I threw out my back and suddenly what had been reoccurring back pain turned into constant pain. To this day, I have not had complete relief from lower back pain; I can only reduce it with opioids, namely Tramadol these days. I have used opioids many times without any issues, but if I was a story on local news, my never-ending back pain would be the tragic start of my inevitable addiction. Instead, I lived the trauma of being denied necessary medication for no good reason.
When the incident first occurred, I was given Vicoden and it helped. I remember asking for a lower dose because if I take too much I get a nasty headache, which is the reason I don’t worry about addiction for myself. Then suddenly in the spring of 2016, Governor Baker signs a bill restricting opioid prescriptions based on the 2016 CDC Guidelines for Opioids and I cannot get another prescription to relieve my pain. I have extremely high pain levels for my back, and yet I had to suffer untreated. I ended up leaving my job for disability and I still cannot work. After months of fighting the issue with my doctors, I received the diagnosis of a herniated disk and sent to a pain clinic. I have been on opioids ever since.
The time spent not properly medicated was hard enough, but when I finally did have access to my medication I kept coming across unnecessary hurdles, and frankly bullshit from pharmacists, just to get my prescription. The worst was when the pandemic forced a change to only using electronic scripts. Due to the rules around opioids, doctors had to prescribe each month separately and not as a refill. CVS would dump the second script and when I called asking for my refill, they told me the script did not exist and it was a problem with my doctor. Luckily I have an understanding pain clinic, but I ended up transferring my pain medication to Walgreens because I had enough gaslighting from certain CVS employees. Still, every time I fill my prescription, I get anxious something will come up and I will be forced to endure days without my pain medication. That is a constant fear I live with every time my pills get low.
My story is not the only one of its kind, but it is consistently ignored. News reports covering the addiction crisis cherry-pick stories that match the narrative of an “innocent” person getting injured and then getting addicted to opioids after surgery. All thanks to doctors duped by Big Pharma. Addiction is certainly a tragic reality and one I would never downplay. However it’s important to understand that addiction cannot simply be blamed solely on the substance they abuse, other risk factors are at play. Many people use addictive substances without issue. Furthermore, it’s well understood that addiction often occurs from drug diversion, such as a family member stealing from a relative with a legitimate prescription.
The reality is that addiction has risk factors such as terrible socioeconomic circumstances, mental illness, trauma, and even genetics. Exposure to opioids alone does not cause addiction, and there are many aspects of addiction that are ignored in favor of the familiar narrative around opioid addiction. It’s easy to blame pharmaceutical companies and doctors for this crisis, but we didn’t get here on the addictive quality of these pills alone. People are suffering and dealing with an illness, and that requires a far more complicated approach that restrictions can never address. This is why people continue to die.
I am not addicted to opioids, but I do understand addiction. Many in my family have suffered from drug or alcohol addiction. Meanwhile, I struggled with nicotine addiction; first with smoking and then with vaping. I understand the stigma, and I know what it’s like to lose people to addiction. It took many tries to quit cigarettes and vaping until finally, I tried a more modern approach — I used Chantix and I’ve been nicotine-free since.
What does a modern approach to drug addiction look like? New York City opened the first of its kind Overdose Prevention Center aimed at giving opioid users a safe place to inject and avoid overdosing. These places also provide information and resources for people who want to quit. However, because many consider addiction a moral failing of being unable to quit, these safe injection sites are controversial. If the goal is to prevent overdose deaths, then reason and statistics dictate that this approach is necessary. Unfortunately, people are usually more concerned with controlling addicts and not putting in the effort to actually help.
As stated before, the issue is complicated, but I do know that our unwillingness as a society to deal with addiction on a humane level plays a huge part in why these deaths continue to rise. We will never find our way out of the crisis if we keep using one narrative as the logic behind every attempt to deal with the problem. Dopesick just repeats the same tired tropes that demonize a medication that legitimately helps millions of people.
Recently, two states have ruled in favor of the pharmaceutical companies, and we need consider why that is. If you have surgery and then your child steals your pills and gets addicted, how is that the fault of the company and doctor that gave you the medication in good faith?
We need to start looking at the opioid crisis as a multifaceted issue with many causes. Addiction can never be resolved through restriction and overdoses will continue to rise. Addicts will suffer and pain patients will suffer because people who don’t know what it’s like to have chronic pain or addiction feel self-righteous about refusing to legitimately help us. We need new ideas based on science to battle addiction, and we need to treat pain patients with what actually works. Morals have no business dictating solutions for either addicts or pain patients. Science must rule the day.
When it comes to addiction and chronic pain, don’t accept the simple answer. Strive to see the whole picture and base solutions on what actually works.
#PainKills Project 