To People Who Think Anyone Taking Opioids Has an Addiction

I have access to opiates. And I’m curious about what it would be like to get high. The two are connected, aren’t they? It’s a no-brainer, right?

Not if you have severe chronic pain, like me.

For people like me, opiates allow us to function. For people like me, they are essential for any quality of life. For people like me, opiates do not give you any kind of a high. They don’t eliminate pain completely, either. All they do is dial it down to a slightly more tolerable level. And for people like me, they are a lifeline that is severely threatened right now.

If you’re thinking, “Doesn’t taking opiates mean you have an addiction?” the answer is “no.” Taking opiates continuously means a physical dependency, but that’s very different from addiction. Dependency is part of addiction, but addiction is not always part of dependency.

If that’s confusing, my story may help you understand.

For about six years, I took morphine prescribed and monitored by my doctor. I definitely had a physical dependency. If I forgot or went too long without my medication, I got sweaty, shaky and my pain levels would amp up quickly. But I did not have an addiction.

I had the option of an additional dose each day, which I almost never used. Someone with an addiction would not have been able to resist that third dose. In fact, if I had an addiction I would not have stayed at the same dose for six years. Addiction means having both a physical and psychological need for a substance to cope with or escape everyday life. Removing access to a drug will not end the addiction, as the person will seek out other substances to cope, both legal and illegal.

As the hysteria over opioids escalated, I was scared I would be suddenly cut off from my medication. So, without any prompting from anyone, I decided to go off the morphine. It was completely my idea and my choice, and I did it completely on my own.

If you’re thinking, “Well, if she could just go off it then she didn’t really need it,” you’re dead wrong. It wasn’t easy to get off at all. My pain levels skyrocketed, my activities became much more limited and I was suddenly completely unable to sleep, so several (more expensive) meds were added.

“But you’re fine now without it though, right?”

No, not right. I’m in a lot more pain all the time now. Sleep is very elusive, and usually torture. Lack of sleep increases pain, which then makes sleeping even harder. It’s a vicious cycle. Plus, my illness (Ehlers Danlos Syndrome) causes my ribs, vertebrae and sacroiliac joint to slip out of place almost every night. Any and all of my joints can dislocate easily during the day too. Fatigue makes my joints even more unstable. If you’ve ever dislocated a joint yourself, or know someone who has, imagine that pain happening in multiple joints 24 hours a day, every day, while continuing to do all your regular activities.

Maybe you’re thinking “… But what about all the people who die from prescription drugs?” Well, let’s take a look at that:

The Centers for Disease Control (CDC) has admitted that they’ve grossly inflated (nearly doubled) the number of deaths from prescription drugs. The reason their numbers are so wildly incorrect is that they included heroin (not a prescription drug) and illicit fentanyl in those numbers. This doesn’t diminish the tragedy of overdose deaths in any way. However, it is prescription opioids that are on the hit list.

“But people get hooked because they get prescribed opiates, right?”

Not quite. Judith Paice, PhD, RN, director of the Cancer Pain Program at Northwestern University said that 75% of people who started their addiction with prescription drugs never had a legal prescription. It is not common for chronic pain patients to misuse opiates. We don’t get high and we know how precious they are.

If you’re thinking you’re lucky this doesn’t affect you, wrong again. You and your loved ones may not have chronic pain now, but there’s absolutely no guarantee that you never will.

Think about what it would be like to have surgery or severe cancer pain and only be given Tylenol.

Sounds extreme? You’re right, it is extreme. And it’s already happening. Oregon Medicaid wants to force all chronic pain patients completely off all opioid pain medications, and other private and government insurers will follow suit.

“But these new rules about opioids were made by experts for good reasons, right? They couldn’t be hurting people!”

Wrong again, on several counts. There are no “rules,” only guidelines that are being misused to pressure and intimidate our doctors. The group of “experts” who set these new guidelines include mental health professionals, but often leave out doctors who specialize in pain management.

The idea of “not hurting people” couldn’t be farther from the truth. The misguided response to the so-called “opioid epidemic” has spawned another epidemic that is rapidly escalating. It’s an epidemic of desperation that is killing people with chronic pain. People on established and effective pain management plans are suddenly being refused the one thing that allows them to function. Left in agonizing pain with no hope of reprieve, many take desperate measures. For every chronic pain patient who dies suicide, there are likely at least a thousand more considering it — it’s a common topic of discussion in chronic pain groups now. That desperation drives some to search for alternatives, and they end up dying from street drugs. Jon Rodis, a national healthcare advocate and chronic pain patient, has seen the desperation epidemic and subsequent deaths escalate rapidly. He told me of one doctor who lost four patients to it. All of these deaths were completely preventable.

One last observation: People who are addicted to opiates use the drug to escape from the world, to avoid living — and they do deserve support and care. But chronic pain patients use opiates to be able to engage with the world. They are not the right treatment for everyone, but for many of us, they enable us to live productive lives, to work, to love, and to participate. Simply put, they allow us one of the most basic rights of every American guaranteed in our Constitution – to live. We will never stop fighting for that, and we invite you to join us. Our lives depend on it… and yours may too.

This piece originally appeared on the Vermont Coalition for Disability Rights. You can find more from Cara on her blog here.