This is about pain, medications, and the opioid epidemic. I’ve never done a crossover piece, as in posting on my weekly blog AND on my personal page. I keep the two deliberately separate. But the line has been blurred for the moment, by forces out of my control: a Utah group’s campaign to address their community’s opioid epidemic.
I’ve been paused on this issue for a couple of weeks, trying to formulate an honest response that doesn’t just scream, “Please stop crushing ALL of us – those of us who genuinely need the meds prescribed at the doses prescribed under your “one-size-fits-all-fixer-syndrome” umbrella!”
A friend shared a post about a group in Utah setting up displays – broken picnic tables, a broken bench, a garbage pail with a ridiculously tiny opening, a port-a-potty with a see-through door, a broken basketball hoop – all imprinted with the message, “This probably isn’t your best option. Neither are opioids. Talk to your doctor about effective alternatives.” It’s meant to deter people from using opioids, I get it. Theirs is a community ravaged by addiction, they’re trying to do what they can to help. I respect that they’re trying to make a difference, I truly do. But I loathe the way they went about it.
It was one of their posters that infuriated me more than anything else. A baseball player in the act of catching a ball and the words, “Pain is temporary. Addiction is not. Opt out of opioids.”
Upset isn’t quite enough to describe what I felt. I would love to ask the person who came up with that slogan the following questions:
Do you have arthritis?
Have you been diagnosed with an autoimmune disease?
Have you been diagnosed with Complex Regional Pain Syndrome in your left foot and then your left leg, right foot, right leg, right hand, left hand, back, neck, arms, and face? (See included description of the nightmare that is CRPS). Have you ever felt like you’re missing a layer of skin? And that raw layer feels like it’s sunburned? And someone is holding a lighter to that skin?Have you ever had nagging pain so severe that you wish you could literally rip the limb off and throw it away? That’s CRPS. Have you developed carpal tunnel syndrome? How about cubital tunnel syndrome? Do you get migraines? Have you ever had your back broken and then repaired to remedy a congenital spinal condition AND to avoid permanent nerve damage or even paralysis? All because the vertebrae in your back were so collapsed that your nerves were being crushed, causing you to suddenly lose feeling in your legs and becoming unable to walk? Have you been told after that spine surgery that you now have a condition called arachnoiditis? (And yes, it’s real. See the included description of it).
I have. I have ALL of those things. It’s been 22 years of one thing after another. That’s my full time situation. So no, my pain is not temporary. And I can introduce you to scores of others who would agree with me. People living with some of the same things I mentioned above. People living with other chronic illnesses, wracked with pain. Theirs is not temporary either.
Not all pain is temporary. Some pain is a life sentence.
When people like Jeff Sessions, the former attorney general, make comments like: “People need to take some aspirin and tough it out a little.” Or “I’m not taking any drugs…. but I mean, a lot of people – you can get through these things.”
Those are the comments of a man who’s never experienced what some of us in the chronic pain/illness community deal with daily. Steeped in ignorance and judgement. These comments hurt us more than he knows. Sometimes, an opioid prescription is the only option. I’m sure you’ll forgive me for trusting my doctor more than I trust politicians, pharmaceutical execs, and Jeff Sessions.
While the country most assuredly has a crisis, I’m not denying that. When everyone started rushing in to “fix” the problem by changing state mandates, limiting the number of controlled substances doctors could prescribe, revoking the licenses of many doctors…. it was crazy. Some of those doctors were absolutely over-prescribing without oversight, without careful follow up and planning to help their patients reduce medication intake. But some innocent, decent doctors lost everything. Patients were being unceremoniously dumped from practices because doctors didn’t want to deal with the pressure from government agencies. Those patients were caught in the crossfire and left to suffer.
Those patients were made to try and find new doctors to pick up their care where their old ones left off. But it’s made them look as though they were “doctor shopping,” hopping from practice to practice, hoping to get as many prescriptions as possible. This was not the case.
Don’t get me wrong, there are people who do it. But the majority of people trying to cope with everything in their charts are NOT doing that. It’s been a mess.
The other issue I take with that poster, with those displays, is that they seem to imply that someone addicted to opioids can simply “opt out” of needing them. It’s to simple and ridiculous. I’m sure they didn’t mean for it to come off that way, but it does. “Okay, sure! I’ll just switch to Advil. Thank goodness I almost sat on this broken bench!” 🙄
I have no patience for this. I’m lucky to be in NYC, in the same practice I’ve been with for 15+ years. But I have friends who live across the country, where the nearest pain management practice is 3-4 hours away. Where the nearest medical center is almost as far. This isn’t a game. When we lose our doctors, starting over is not a simple thing. Each time I need to see a new specialist and have to go through my 22 year health odyssey, it’s not easy.
My medical chart is like a telephone book, (remember those?). It’s full of blood tests, post op reports, X-rays, MRI’s, and more. As one doctor put it, “your medical record unfortunately speaks for itself, and what it says is very painful. It’s a lot for one person.” And I’m not alone.
This mess has left a vulnerable population of people in the middle of a very volatile mess. One the one side, we have all of the fixers – the people who think they can make the crisis go away with laws, limits, policy changes, and more. On the other side, you have yet another vulnerable group of people, addicted to drugs and struggling to stay afloat. And we’re in the middle, being pain and med-shamed. Ask anyone who takes an opioid prescription if they’ve ever been treated badly in a pharmacy. Trust me, they have. At least once in their medical life. It’s brutal and humiliating. I know because it happened to me, more than once, in the early days of my health crisis.
If you’ve been with me up until this sentence, thank you. Managing pain – the serious illness kind, not the stubbed your toe or paper cut kind – is hard. It’s a full time job. One I never wanted. I should still be working as a registered nurse. But here I sit, trying to advocate for myself and others like me.
It’s too easy to lump everyone together and assume that experiences will be the same, that we can suddenly function well if the rules change. CRPS is a killer. People have died because they couldn’t take the pain they were left with, especially without the proper medication regimen. It’s not a game to us.
Please, please think differently about this crisis. People battling addiction desperately need proper care and long term planning to help them resume healthier lives. It’s not as simple as hanging a poster and thinking everyone will immediately comply.
People battling chronic pain need to be validated, believed, and treated with respect and the right medications. Not belittled by people who have no idea what they’re talking about.
So there, I’ve addressed it. I’ve said (most of) my peace. And all without profanity! It’s a banner day!
Seriously though, thank you for sticking with me and hearing me out. And, by the way, I function extremely well with all of the stuff I mentioned earlier. That’s one of my super powers: ignoring until I can’t, dealing with flares the best I can, and getting on with my life. Most of you will say that you had no idea, that if I hadn’t said anything it would have remained an unknown. I prefer it that way. But with this, too many people are getting hurt by (mostly) well-meaning “fixers” who’ve decided that the best way to deal with the opioid epidemic is to refuse to allow doctors to continue prescribing to anyone – or, at the very least, to make it hard for them to do so. I can’t let that continue without saying anything. The stakes are way too high.
Wishing each of you a safe & calm weekend,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine