It looks like opiates had at least something to do with Prince’s untimely death. (I know the reference dates the article, but the point still rings true.) We don’t know very much about what happened so I’m going to resist the temptation to get into the imagined particulars of his situation, but I have to tell you this makes me so very sad. It makes me sad because I know what it’s like to suffer debilitating persistent pain over a period of years, the kind of pain Prince apparently confronted each day. I’m sad, but I’m afraid too. I’m afraid of the seriously counter-productive approaches that many a friend will take, when they talk to someone who wrestles with thecomplex realities of persistent pain. This post is written for all of you who care for someone dealing with those complex realities. Trust me: you don’t get it. I do. Please listen.

Here’s what it’s like for us: imagine with me for a moment, what happens when someone notices you’re in a lot of pain. They ask if you’re OK with enough interest and kindness that you decide to open up a little window on the epic struggle you’ve had with pain over the years. This is when it goes south. The response is often something like, “Have you read that book by . . . oh I forget his name, but he’s really good; he swears that if you eat dried praying mantis wings roasted in sesame oil your pain will go away. You should try that.” OK, so I made that one up, but you see what I’m getting at. People are generally kind and so they want to offer help—they’re uncomfortable around the pain—but it ends up not being too helpful. Everybody has a suggestion, but if you’ve been dealing with persistent pain for a long time this is the moment when you shut down. You’ve done enough, tried enough; you simply can’t bear the idea of trying the “next thing” that will supposedly take your pain away. There have been too many dashed hopes. It’s not going to happen. That doesn’t mean that as a partner you can’t make suggestions, after all, it effects your life too! You just have to choose your moment.

Worse still, that moment at the party is when we feel it, even if it isn’t there—(which it usually is)—that’s the moment we feel the judgment. We can almost hear it, “He’s just addicted to opiates. He’s not really in pain. If he was he’d want to do anything to get out of it.” That really isolates us—shuts us down. Sure some of us are addicted; nearly all of us are or have been physically dependent. (There’s a difference.)

Now hear this: most persistent pain patients already have a complicated relationship with the damn medicine. We feel bad enough taking it already, judgement doesn’t help, it isolates, makes it harder to deal with it. That’s dangerous because a long term engagement with persistent pain isolates us from the workplace, from family and friends and from the best of ourselves. Ask a persistent pain patient what they’ve lost to pain; the list will be long. Worst of all, it isolates us from the source of life itself, from what Whitehead called, “that gentle persuasion towards love,” the evolutionary impulse. My pain doctor says, “It seems like some of my patients have lost their soul to pain.”
I think mostly, good people feel pretty helpless when they’re with a persistent pain patient. They really don’t know what to say to someone who’s suffering. It is more than a little uncomfortable to watch someone in pain. Even our most intimate partners will pull back if they’re not paying attention to what’s happening inside their hearts.

So I thought I would write to tell you what we need at that moment. I thought I’d write a kind of primer for supporting someone who spends most of their life in pain. First of all, there is hope, but we’ve been through enough that we’re often not ready to hear that. Be patient with us, seriously. Our willingness to dive into a new way to deal with pain, is cyclical. Sometimes we’re up for it, sometimes not. A few facts might help while you wait.
There are 9 areas in the conscious brain that process pain. In a healthy brain about 5-7% of each area is wired up to process pain. That figure rises to 25% of each area in a brain that suffers from persistent pain. Persistent pain is a disease in and of itself, one that is not related to the initial injury. The good news is that the same mechanisms that created the problem can be used to dismantle the persistent pain process. It is a question of counter-stimulating those nine areas of the brain to “take the real estate back.” That takes a lot of experimentation and dogged persistence. Trouble is, that when I think of persistent pain patients, “dogged persistence” is not one of the first traits that comes to mind. You can see why we might need some people around to encourage us along the way, right?

It also might be helpful if you knew something about opiates. First of all, about 10% of patients that take opiates for persistent pain develop some form of “addiction” to the medicine; they have difficulty controlling their intake. We all develop physical dependence but only 10% really lose control. Second, let’s be clear, opiates are great in the relative short term. They do a miraculous job of relieving pain, and they make you feel good! Why wouldn’t you want someone in pain to feel good? But here’s the rub—it’s not just that you need to take more and more of them, it’s that eventually, they stop working. When they do, they leave us with more pain, not less. They contribute to the Chronic Pain process. The key then is to use the medicine while we are training our brains not to feel pain, and developing other strategies to deal with it. As I said, this takes experimentation, dogged persistence and a good doctor.
When you’re with someone who is suffering persistent pain, please don’t assume you know what is best for them. Let their doctor, (specifically their pain specialist), figure that out. Seriously. I know it’s not popular to place trust in a doctor these days. But really, the news media notwithstanding, doctors know more than we do, and really, most people want to help. What we need is encouragement and support as we follow through on the plan we develop with the doctor. If you’re worried about your partner, you might think about a few basic rules I used for dealing with persistent pain and that strange and dangerous dance it necessarily does with opiate medications. Maybe they can facilitate a discussion that will get you involved. Choose your moment though.

Rule Number One: I never, ever took a dose of medicine that my doctor did not approve, period. We had an understanding that if, in an emergency, I needed to take more than we had planned, I would e-mail him immediately so he could weigh in about what to do going forward. This requires a relationship of trust with the doctor. You have to be able to trust that she or he won’t let your pain levels rise uncontrolled.

Rule Number Two: I never edited what I said to my doctor in an effort to manipulate him into giving me more medicine. A couple of years ago, I told him that I was worried I might be medicating myself for depression with pain pills. He wasn’t mad at me, it caused him to focus on the depression so I wouldn’t be in that position. A corollary to this rule of never editing what I said, is that my wife always had permission, written permission, to share information and impressions with my pain doctor. She could do that any time she wanted. She, after all, has a vested interest. (Pain patients take note: It’s not your fault; there’s nothing to feel guilty about, but your pain has a big impact on your partner’s life as well!) Since my wife had a voice, it was also reasonable to expect that she would support the process that came out of it. (She did.)

Rule Number Three: Even now that I’m finally off the opiate merry-go-round, I am always working on some method of pain relief that does not involve medicine. That doesn’t mean I do everything, or everything at once. (Really, I’ll never eat dried praying mantis wings no matter what they’re roasted in.) So maybe I’ll work with acupuncture for a couple of months. If so, I don’t have to do Pilates, see a Chiropractor and go on the Atkins diet that same month. Slow and steady; that’s what’s needed. I just keep at it. It takes time. I’m sorry to say this, but it sometimes takes years.

Rule Number Four: I found a doctor who was knowledgeable in, and would support, a wide variety of pain control treatments. Mine, Dr. Moskowitz, along with his partner Dr. Golden, offers a lot of information on the web at www.neuroplastix.com.

Let me mention here that I am a pain coach, in large part because Dr. Moskowitz, knowing that people have difficulty following through on Neuroplastic Treatment, asked me to develop a coaching process. You can learn about that process in my free video training as well as make an appointment. All pain calls for transformation and that’s because it calls for us to move out of isolation and into the creative pulse of life all around us. We need your help not your judgment, so come closer, work with us. You can’t do it for us, but you most certainly can have an impact.

Consider: ages ago, when my back first started flaring up, about once a year the pain would get bad enough that I would go to the doctor. She tried other things, but eventually settled on giving me a couple of days of Percocet. I’d take it; that would release the pain; then another year would pass. On probably the third or fourth go around, as I left her office, she put her hand on my back in a compassionate and caring way. The pain disappeared in an instant. It just vanished. Sometimes a comforting hand is what we need.