From time to time you might see a story pop up written by someone in chronic pain. That story will often detail the needless and unproductive drama they’re forced to endure at least monthly and sometimes daily to keep their pain levels manageable. A few hundred years ago they might have eventually killed themselves to escape it. But today we have much better options—we have the technology to deal with this. Thanks to medical science, we not only have all kinds of painkillers and methods of administrating them that can be, in theory, carefully tailored to specific diseases, tolerances, and personal preferences, but we have them available for fairly cheap prices. These are not typically super-expensive drugs occupying the top rung on the Rx formulary ladder. Far from it: Many of these substances have been refined or synthesized from analogues found in nature that have been known and used for centuries.
if you see one of those stories I hope you take the time to read it and recommend it if you find it informative, because I can tell you— this is no joke. These people are not wimps, they are not seeking a high, they are not weak or immoral or malingering: They’re just in pain all the time. But as the War on Drugs has escalated without end in the U.S., pain patients have been needlessly thrown on the sacrificial fire more than any other group. I know this intimately. I’m one of them.
I have a progressive genetic disease called anklyosing spondilitis, or AS. Some biologists opine this is an evolutionary relic from the days before antibiotics, when natural selection, in the face of an endemic disease like TB or plague ravaging through early city-states and medieval towns, reached for whatever kept a person alive long enough to reproduce. It is diagnosed by symptoms, signs, and genetic markers. I probably have two copies of the primary marker HLA-B, which means I’m damn near immune to a whole host of bacterial infections. An overclocked, trigger-happy immune system can do that for you. But it comes at a price. The immune system may not be able distinguish so well when it comes to friend vs. foe. My immune system doesn’t stop at harmful germs: It goes after damn near everything. It attacks the spine, joints, and soft tissue, and the damage is often permanent. The pain isn’t just an ache or a nuisance. A full blown AS flare up is like dozens of fiery wasp stings straight into the bone.
AS is just one type of chronic pain-inducing autoimmune disorder, and it’s nowhere near the worst of the lot. There is another called fibromyalgia, where the immune system is thought to directly attack nerve endings. This can cause pain so intense that you’ll see patients flail around helplessly trying to describe it in words. The only humane solution is to bomb them out of their minds on pain meds until the flare up peaks and passes. Autoimmune disorders typically get worse over time, and they are just one class of culprits that never get better. Pain comes in many flavors, produced by injury, by cancer, and other non-genetic diseases with names so rare and exotic you’d never recognize them—until you are afflicted. Back and neck issues are notorious, but just about any part of the body that has pain receptors can light up on a moment’s notice. Feet, calves, knees, thighs, hips, pelvis, ribs, every organ in the abdomen and chest, shoulders, arms and hands, face, jaw, teeth —every part of your skull basically—they can all turn on you in a second, with no warning, sometimes for no discernible reason. Doctors call the latter idiopathic pain, a fancy word for “no one knows why it’s happening.”
When I was a kid, I didn’t get sick much. But I had a lot of weird aches and pains, labeled at the time as idiopathic. By age four I’d wake up at night with sheets soaked in sweat from thrashing around half-comatose in agony. Disorders like AS were just coming into focus at elite research facilities around this time, and hadn’t made it down to the general practitioner level yet. Doctors couldn’t find anything wrong with me. One explained to my worried parents that some kids are just wimps, that they have a low pain tolerance. I just wasn’t tough.
As I got older and more active, I’d break or dislocate something and go to the ER, and the docs would come up to me with the X-ray, show my mom and I the problem, and ask if I was hurting and needed a shot. They’d look puzzled when I said, “No, it hurts a little but it’s not that bad.” Finally one day when I was about 14, a young ER doc looked at me with a shoulder hanging out of joint, popped it back in, noticed I didn’t come unglued, and said “Wow, you have a hell of a pain tolerance, kid.” That was the first clue: I wasn’t a wimp! I’ve since found that I have an enormous capacity to handle pain.
And this isn’t to brag (okay, maybe it’s to brag a little), but it’s important to understand because it’s true of most chronic pain patients. A 5-year-old girl who survives bone cancer can have a higher pain tolerance than a Navy SEAL. Because it isn’t how tough you are, it’s how the pain registers in the brain. Since a lot of us have been dealing with this shit for years, in some cases since our earliest developmental childhood years and in many cases in an undiagnosed, unmedicated state of total ignorance, we’ve developed that kind of endurance through sheer exposure.
A friend of mine with fibromyalgia told me that her flare-ups made all three of her natural childbirths feel like mild stomach cramps. I had a heart attack, a full blown widow maker, the kind that drops big badass football players to the ground rolling in agony and it felt like minor heartburn. I ran three miles to shake it off.
So, when a pain patient in your life says they hurt? Trust me, odds are they fucking hurt bad.
And therein lies the problem. We have the drug technology to avert pain, and we’ve had it for a long time. It’s cheap, it’s widely available, and the biology is fairly well understood. But in the U.S. we also have a War on Drugs—better described as a War on Some Drugs. Painkillers are classed in with the some drugs, which for some bizarre reason means pain patients are classed in with drug abusers.
We basically have two enemies, both with enormous power over our personal health. The first is the DEA and related police forces, which have been given greater and greater authority to ruin our lives and our doctors’ lives and our nurses’ lives, etc., purely because as a society we’ve allowed some risky activities, like drug-taking, to be hugely regulated or outlawed. For whatever reasons, we classify addiction as a crime—at least some forms of addiction, while others are exempt. It’s all puzzling and irrational and ultimately indefensible. It’s the Emperor’s New Clothes writ large. Everyone knows this.
We don’t do that with other risky behaviors. I can enjoy the rush of skydiving or rock-climbing without risking arrest or the slightest harassment. I don’t even have to carry health insurance to do it. But if I’m having a sudden flare-up on an out of town trip and ask a buddy for a Vicodin, we could both go to prison for years. Because hey man, I might hurt myself, or feel a little too good!
That’s just the beginning of this insanity. Law enforcement agencies tasked with enforcing the War on Drugs can do just about anything they want to you these days. They’ve grown into monstrous organizations that prey directly on the public. They can knock down your door, go in guns blazing, arrest every survivor in the house on an anonymous tip from a cranky neighbor, and then go on Facebook and brag about it. They can seize your car, your bank account, even your home, without arresting you for any crime.
By the way, that’s just for you regular people. If you’re a pain patient, you usually have to sign away even more rights to be treated. Depending on the state and county, you may have to agree, for example, that these creepy drug war freaks can make an unannounced visit to rummage through your medicine cabinet and confiscate anything they want without showing cause, or demand your blood and urine anytime they want. Complain or record and they’ll take you away in shackles (the crime of complaining or documenting the event is usually called obstruction of justice or non-violent resisting arrest). If you live in a state where pot is legal then you’d better not smoke any. If they find that evil drug in your system you won’t just get cut off from your pain meds—they can take you to court and get you fired from your job.
It should come as no surprise this occupation is now thoroughly infested with the worst sort of raging megalomaniacs to wear a badge and pack a loaded machine gun since the Mafia days.
The other enemy is those regular people, the ordinary Joes, who are not willing to accept that pain is a very real thing and that, one day, they’ll probably find that out personally. We’re all human, and that means most of us, sooner or later, will be pain patients. That’s especially true for the most vulnerable people of all. Yeah, I have bad news for you: You’re going to die. And I think that sucks. But what sucks even more is you might live for a long, long time in intractable pain. Sure, you might get run over by a bulldozer or hit by lightning. But odds are way better that you’re gonna die slowly and painfully.
You won’t be like you are now if that happens: Strong and virile and alert. You’ll be progressively compromised across the board. You won’t be able to fend for yourself against much of anything or anyone, and you sure as hell won’t be able to take on the Drug Warriors if they come around to meddle in your healthcare. The upside of dying slowly is you could live for a quite a while, maybe for years. The downside is you could spend those years withering away in exquisite pain if you are deprived of the best painkillers available.
If things keep going the way they are, you could wind up being physically and mentally tortured at your time of greatest need, shamed at every turn by the temporarily healthy and permanently pious, called an addict, a junkie, a loser, and a pussy. And if you somehow marshall the energy to push back one iota by, say, ripping out an angry letter to the local editor, your “health” may be suddenly monitored by the cops and your friends and coworkers might be “interviewed.” If you’re the kind of person who still can’t keep your mouth shut when you witness thuggery—and I hope you are—maybe they’ll systematically rob you of every penny to “pay” for what it costs them to harass you to death. Until you finally, mercifully nod off for the last time, flopping around in your own filth and writhing in unspeakable agony.
To avoid that horrific end for yourself or loved ones, you have to take on these drug war assholes now. Because when you’re facing terminal, progressive, painful disease, you’ll understand what it means to be a chronic pain patient. Controlling pain will become your only job. You won’t have the time or energy for anything else until that pain is managed. That job will depend, utterly and completely, on finding a doctor willing to take on the increasing risk of prescribing you the most potent painkillers on Earth and pharmacists willing to take the risk of filling those prescriptions. They will probably have to try different combos and cocktails of the most regulated drugs in the country before they find one that lends you the greatest therapeutic benefit with the least side effects. They will need the professional freedom to change those combinations as your condition changes.
And that’s what will make all the difference in the world for you, for your last Christmas, your last birthday, your last hug: That’s what will allow you to squeeze out every last precious drop of life with dignity, in comfort, and at peace—right to the end.