dSavannah note: I started this post – well, I can’t remember when – and I’ve been working on it ever since. Even if it’s not quite “ready”, and I can’t think of a better headline, I’m just gonna publish it… I’m sick of looking at it. And I’d like to cross at least one thing off my massive to-do list. (Which never ever ends. Being a Sick Person is harder work than you’d imagine.)
I had a doctor tell me that he was able to have a dental procedure with no novocaine because he imagined he was on a beach with storm clouds out on the horizon. And that he concentrated on the clouds. And thus he had no pain.
He didn’t say it explicitly, but implied that I should be able to do the same.
At the time, I sat there, kind of stumped, not knowing what to say.
Is the mind an amazing thing? Yes.
Is it possible to “trick” your mind into not feeling pain? Yes.
But will it work for me, a chronic pain patient? No.
What I will tell him at my next opportunity is that it probably worked for him because:
- it was pain in one, relatively small area of the body
- he more than likely had no anxiety around the procedure
- he knew the cause of the pain
- he knew it would be for a very limited amount of time.
But for a chronic pain patient with multiple illnesses, like Charis, who has Ankylosing Spondylitis (AS); and Jennifer Brea, who has Myalgic Encephalomyelitis (ME); and Farrah Kaeser, who has Ehlers-Danlos Syndrome (EDS); and me, who has ME, fibromyalgia, spinal and nerve issues, etc. etc. … well, it ain’t that easy.
Believe me, if we could just imagine the pain away, we would. And I, my fine feathered friends, have a very vivid imagination.
I came up with these reasons why merely thinking the pain away won’t work:
- The pain is GLOBAL. Everything hurts. *EVERYTHING*. I have pain in places most people never even think about on their body.
- The pain is NEVER ENDING. Literally. It NEVER ENDS. There is NO END in sight. It is every second of the day. Every minute. I get no reprieve. EVER.
- The pain moves around. Sometimes my lower back screams at me. Sometimes (like right now) it’s my right ankle. And my neck. And my wrists. (So typing this is kind of a stupid idea. But I have to write when I can.) (And in the time it took to write the remainder of this, the pain has now moved to my left ankle and my left knee.)
- The pain has different levels of intensity. Sometimes it’s a dull throb. Sometimes it’s like a migraine. Sometimes it screams at me. And those varying levels of intensity can happen *at the same time*, in *different body parts*.
- I get random bursting attacks of pain. I’ll be watching TV, for instance, and an indescribable pain will shoot through a part of me – my knee, or my back, or anywhere else – and I will literally sob and gasp and scream out loud. Regardless of where the pain is, my entire body will thrum.
- There is no “reason” for the pain. (Other than my illnesses, of course.) It’s not like I stubbed my toe, or wrenched my back, or broke a bone, or was having a tooth drilled on. It just… happens.
- I have anxiety and other mental illnesses. They do not CAUSE my pain, but they don’t help. As a neuroscientist wrote in a recent article, “the body proper can influence the brain and the mind.” Or, as I put it, “you can be depressed because your body is crapful of pain, not just in pain because you’re depressed.” AKA it’s NOT all just in my head!
When I told Farrah, she called the doctor a name (a very polite one, actually), and wrote another very good reason ‘thinking away the pain’ won’t work for chronic pain patients:
I rarely need novocaine for my dental work bc that level of pain is so minuscule compared to what i live w daily it hardly registers. So just imagining it (chronic pain) away is a much bigger ask! Plus, as you mentioned, it’s forever. Maybe you can imagine away 30 min of pain if you focus hard enough. But every minute of every day? Not practical. That would mean spending literally your entire life in “meditation” & never living.
If I “empty my thoughts”, which is required of meditation (and which, btw, I actually can’t do; PTSD, y’all!), I won’t be able to think to write this blog or pay my bills or talk with my husband or interact with my spoonie friends… Ya know, live in the small way that I can, the way that my illnesses allow me.
And yes, as Charis said, sometimes “describing the pain in medical terms, like ‘protracted pain’ and ‘medically necessary’ can help some physicians look at it physically, not mentally”… but not always. Sometimes they get mad if you know “too much”.
And by the way, while I’m on my soapbox about this, having chronic pain and chronic illness and disability is NOT a moral failing. We aren’t lazy. We don’t need to work harder. Many of us worked our whole lives (me since 1987!) until we got sick and couldn’t any more. We can’t just “get a job”. (I would scrub toilets if I could. I cannot. One toilet and I’d be in so much agony and I’d collapse for at least three days.)
Charis is a full-time patient and a disability / AS advocate.
I am… a full-time patient. (You have no idea how hard that is to say out loud.) (Or its companion: I am disabled.) I am also an advocate.
Pain is real. It is debilitating. It is horrible. I can’t just imagine it away. And telling people who have pain as a constant companion to just “not think about it” or “accept it” (which is actually a thing right now!) is, at best, hurtful, and at worst, actually harmful. (See my post about this with important calls to ME patients.)
I also can’t magic it away with unicorn tears and turmeric. (So PLEASE don’t tell me or other patients with chronic pain how to manage the pain, or what to try. There is a 99.9% chance I already have tried it, or am trying it.)
Everyone’s pain is different. Since I have debilitating pain myself, I can very much imagine the pain Charis and Farrah and Jen have, but I don’t know exactly how it feels for them. And unless you have one of our conditions, you can’t possibly know either. So, with all due respect, STFU.
PS. The New York Times currently has a survey up for thoughts on their coverage of the “opioid crisis”.
Besides the fact they never talk about chronic pain patients, it is clear from the survey they haven’t even thought about those of us who live minute by minute with chronic pain and use our meds responsibly.
They don’t even consider the people harmed (even so much that their pain drives them to suicide) when their pain medications are stopped.
Now is a chance to tell them about patients with chronic pain, those who need pain medications to even think about functioning. Like me.
I beg you to submit your thoughts, and to, as they say: Help Shape The Times’s Opioid Coverage.