By Jorie –
A few months ago, I was profoundly confronted with something I’m sure the majority of us chronic pain patients face pretty frequently: medication shaming.
We’ve all heard about it happening, but sometimes we think we’re immune to the scrutinization and stereotyping. Oh, don’t worry, we think, this only happens to those people who look like junkies, the repeat offenders, the beggars.
Unfortunately for me during this instance, there was not any appearance to go by on a phone call, such as the one I had with a nurse at my old neurologist’s office, but there sure is a lengthy medical history and paperwork. This is definitely one of the worst cases of medication shaming I’ve ever experienced.
The conversation went something like this:
“Hi, may I speak to Dr. M.?” I weakly mumbled into my cell phone’s receiver, mid-migraine.
The pain was pounding like a hammer on a nail in my skull. I felt fire radiating from my temple and spreading through my veins. I could feel it just pulsing, pulsing, pulsing with the beat of my heart.
“Sure, just a moment. Can I have your name and date of birth?”
I questioned these two pieces of information for a quick moment before I fed them to her. How do you forget your own name and birthday? Cognitive problems are just one of the many strange symptoms of migraine.
Seconds passed and the receptionist told me she’d have to transfer me to my doctor’s nurse — not a strange occurrence — so I obliged and waited as the staticky on-hold music began to play a recognizable classical instrumental piece.
After a few lines, the phone picked up with a click. “Hello, this is Dr. M.’s nurse, how can I help you?”
“Hi…” I struggled for words. This was not just from the migraine, but also from the anxiety I have for talking on the phone. “I’m in the middle of a bad migraine cycle and wondering if you can write me a prescription for either prednisone, fioricet, or ketorolac to break it. None of my regular medications are helping right now and I’ve been having migraines daily for the last few weeks.”
“Let me just go over your medical chart,” she noted bluntly.
A few moments went by and I could almost sense the animosity through the static of my phone. The emotion traveled from the phone to cell tower back into my ear and it felt tangible, sticky with bitterness.
By the sound of her voice, she had clearly seen the list of all my medications, daily and PRN (as-needed). “You mean to tell me that NONE of these medications are working for you?” she spat through the receiver. “Have you even tried them all?”
“Yes, of course I have. I can only take so many at one time or even in 24 hours’ time. I have tried each combination and I need something stronger to break the cycle.” I pleaded. “Dr. M. knows what I need if you just ask him.”
“Well, I’m sorry, but he isn’t available right now. I’ll pass your message along to him and have him call you back. In the meantime, I can’t do anything for you. You’ll have to make an appointment,” she said. And as a shady afterthought she added, “You should know we don’t prescribe those medicines over the phone anyway.”
I struggled to hold back tears as I knew this was a nurse who didn’t “get it.” No one seems to “get it.” It’s like they say in our close-knit chronic illness community: “You don’t “get” chronic pain until you “GET IT.” I accepted that I’d be living with this painful cycle for a while. I broke down and made the appointment she told me I’d need, with the hope that Dr. M. might write me in a prescription for something sooner.
And I waited. Once you become accustomed to dealing with the medical field you realize it parallels to the military: hurry up and wait.
I waited two full days for Dr. M. to call back to let me know he sent in a prescription I needed to break this migraine. And when I talked to him, he only muttered a few lackluster words of apology.
“I hope your headache is gone,” he said nonchalantly. “I called in a prescription for you, it should be ready soon. Sorry for the delay.”
My headache. My headache. My HEADACHE.
This is possibly one of the worst insults anyone can make to a migraineur — to call our migraines a simple headache is a complete and utter put-down to the pain and despondency we experience due to these attacks. As I’m sure I’ve outlined in previous posts, migraines are made up of a whole plethora of symptoms. While severe head pain may be the most well-known, migraines in fact affect the entire body from head to toe. Cognitive difficulties, allodynia, photosensitivity, mood changes — you name it, we have it.
“Thanks,” I replied irately.
“Okay, well… good luck, then,” and he hung up. It was such an exasperating phone call. I thought over his comment anxiously. “Good luck.” What does he even know about living in this kind of pain day in and day out?
What do any doctors know about it, other than possible (but seemingly rare) personal experience? Seeing and talking to a patient with a chronic pain condition is easy to pass off superficially. It’s all so subjective. There are many great doctors out there, but there are so many more who don’t pay proper attention or pass those of us who are truly in pain off as “just another addict.” Ones who don’t give their patients what they need to live a comfortable life. Some, such as have emerged in the news lately, don’t even believe in relieving pain — they believe in instilling a “tolerance plan” because there is such a crisis of abuse among people who don’t actually need these medications.
An Overview of the Opioid Crisis
The raging opioid epidemic is one that has a lot of us chronic pain sufferers up in arms, especially as of late. In the last few months, CVS Pharmacy as well as the insurance company Cigna announced that they’d be cutting back on narcotic painkiller prescriptions for patients, leaving many of us with daily pain dragging in the dust. Many politicians have also taken the stance of “just say no” to opioids — much easier said than done for a lot of us.
But indeed, it is a crisis. Most of us will readily agree to that. Even Trump officially stated that opioid abuse is a public health emergency in mid-October 2017. Something does need to be done about it, but the real question is: what? And how?
Before I dive into that what and how, here are a few facts regarding the opioid problem to get us all up to speed — because yes, it is a real problem:
– Every day, more than 90 Americans die from overdosing on opioids.
– Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers.
– The number one cause of accidental death in the U.S., replaced by auto accidents, is now opioid overdose.
– Roughly 21 to 29% of patients prescribed opioids for chronic pain misuse them.
– In 2015, 276,000 adolescents were current non-medical users of pain reliever, with 122,000 having an addiction to prescription pain relievers.
– Women are more likely to have chronic pain, be prescribed prescription pain relievers, be given higher doses, and use them for longer time periods than men. Women may become dependent on prescription pain relievers more quickly than men. 48,000 women died of prescription pain reliever overdoses between 1999 and 2010.
These are obviously shocking statistics and present a HUGE problem, not just for us chronic illness patients but for our country as a whole. But the answer to curing this issue doesn’t lie in restricting and eliminating opioids for good — opioids inherently have very helpful properties. It does not mean that those of us who need and rely on those pain medications should be punished for the entirety of the addicted population.
The Supposed “Fix”
Before I jump into how this affects us chronically ill people personally, I’ll touch on how the U.S. Department of Health and Human Services (HHS) plans to reverse this quickly growing problem.
The HHS has outlined a plan they intended to initiate in early 2017 and focuses on five key areas:
– Improving access to treatment and recovery service
– Promoting use of overdose-reversing drugs
– Strengthening our understanding of the epidemic through better public health surveillance,
– Providing support for cutting-edge research on pain and addiction, and
– Advancing better practices for pain management.
Alongside the HHS, The National Institutes of Health (NIH), which is a component of HHS, has proposed their own way of dealing with the crisis, specifically focusing on 3 criteria:
– Safe, effective, non-addictive strategies to manage chronic pain,
– New, innovative medications and technologies to treat opioid use disorders, and
– Improved overdose prevention and reversal interventions to save lives and support recovery.
This all sounds great in theory. But theory doesn’t often pass by in reality.
Our Personal Reality
For us chronically ill patients, punishment seems to be exactly what’s going on. This isn’t an opioid crisis — it’s a chronic pain mismanagement crisis.
And it’s not just punishment, but we are now judged a little harsher, eyes darting back and forth from the bottle to our outward appearances. I can read what’s going through the pharmacist’s mind: “Is she a junkie? Should I even give this to her? Wow, look at all her prescriptions… I wonder what’s even wrong with her? If anything… maybe she’s an addict, playing the system. Hmm…”
The number of prescriptions many of us need to fill at one time is suddenly questioned. Again, for chronically ill patients, we often have to fill several prescriptions in one go. This used to not be a problem for me, but in the last 6 months, at a local pharmacy I’ve been dealing with for years, the head pharmacist now has to sign off on me receiving my medications.
Little errands that used to be so run of the mill, daily mundane tasks, have become almost embarrassing to do. I feel ashamed every time I have to go pick up my pain medicine because of the looks I get. I hold up the line because I have to endure that extra screening process. I’ve started using an online prescription company through my health insurance to receive medications by mail that I take palliatively so I don’t “hold up the line” in the middle of CVS anymore.
Everyday is Judgement Day for Opioid-Users
Speaking of others’ opinionated glares, it’s not just the general public in the pharmacy that I have to worry about.
My own family and friends give me hell for taking medications I rely on just to live a functioning life.
“That’s your damn problem, all those pills,” said one relative.
“Don’t you think you’d feel better if you came off of some of those meds?” said another.
To a certain extent I do agree with them. I don’t like being on so many medications, but for quality of life reasons, I have to. Over the last few years I’ve been trying hard to integrate more holistic treatments into my regimen, titrating off some harsh medications I felt I didn’t need and only taking pain medications when I truly needed them, after other means of relief were attempted and failed.
However, I don’t appreciate the judgement that others cast on me regarding my medications. They are not in my shoes. As my psychiatrist put it to me recently, “everyone is an armchair doctor. Everyone thinks they have the answer.” He’s very right in that sentiment — everyone will try to tell you what’s wrong, or you need to do this or that to cure your pain. Take a walk, eat kale, do yoga, cut out dairy, and so on and so forth.
Newsflash: We aren’t seeking your advice, and chances are, we’ve already tried whatever remedy you’re about to toss at us. Being chronic pain patients means we try nearly any and everything, and I mean everything. The weirdest, most unheard of remedies are commonplace among us because we just want to feel better. That’s it.
So after writing this I have a few things to say about medication shaming and the opioid crisis for anyone who might have a negative opinion about it:
1. In most cases, if we’re taking those meds, it’s because we need those meds. More than one study has shown that the largest group of people taking medication, especially opioids, are those with chronic conditions and they are not abusing their prescription drugs. We are not the crisis. More of us are responsible with our meds than anyone, yet we’ve become a target with a big red bullseye on our foreheads. We are the people you see everyday, in the grocery store, the coffee shop, or the park going about our days. And why? Because our pain has been managed — by opioids!
2. Hearing your “better than thou” opinions is no help to us at all. I mentioned it above and I’ll say it again. Please do not give us unsolicited advice, and don’t act like you know the cure to every health issue we battle. Sure, your cousin’s best friend’s uncle might have benefitted from it, and that’s great, but there’s no need to push it on us. 9 times out of 10 we’ve already tried it.
3. If you are a doctor, nurse, or other medical professional, please treat us with nonjudgmental respect. Usually we have gone around and upside down and through every rabbit hole there is to get rid of our pain. With that comes our medical records that look more like war stories than anything, but it’s important that you don’t judge us based solely on that criteria. Much of the time a handful of the meds listed on our charts are old, outdated, and we don’t even take them regularly. Maybe we had one administered in the ER and never again. Whatever it is, if you have questions, just ask us politely! We can tell you our medication history.