It’s not often that I read an article that makes me burst into tears. And maybe it’s because I’ve been in constant, intense pain for the last few days, or because I’m hormonal, or perhaps I’m just being HYSTERICAL… but this piece in Vox about new research into objective pain testing using functional MRI (fMRI) made my eyes squirt.
Raise your hand if you have chronic pain
Ah, yes, so many of you. You’re in good company: The American Academy of Pain Medicine (AAPM) estimates that 100 million Americans, and approximately 1.5 billion people worldwide, live with chronic pain.
So many of us have had to circle a little face in the traditional pain scale, a row of dorky little faces that propose to indicate how bad we’re feeling. If you’ve ever sat in a doctor’s office, sobbing, wracked with pain, and been handed a slip of paper with this pain scale, no one would blame you for crumpling it up and tossing it aside. Six little faces are not enough to help us indicate the extent of our pain, or the extent to which it robs us of normalcy.
So the idea of more objective testing—brain scans, science, techmology!—is very intriguing. Especially for women like moi (I mean, all women, and especially those of color), because as the Vox article reminds us, women are less likely to get pain treatment they need than men, and people of color receive less-effective treatment as well.
The thing that made me cry as I read the Vox piece was the description of a pain doctor who is identified as a vocal opponent of the fMRI testing concept. He cites the possibility that an inconclusive or negative test could be used against a patient who could be feeling pain that isn’t picked up on the scan. And while I agree, that would suck, it’s that kind of fear that holds us back from progress in the pain research and pain management fields. Why focus on a potential negative outcome, when we could focus on the potential massive positive outcome?
Don’t get me started on pain medication
I lost track long ago of how many conversations (sometimes arguments) I’ve had with folks about medication for pain management. People without chronic pain are the biggest culprits of myth perpetuation, in my experience, proclaiming that all pain medications are addictive and that we should ban them. (Yes! I’ve heard this many times in conversations, even with friends.)
It’s true, as Vox points out (as does AAPM), that prescription pain medications are responsible for many deaths in this country. But it’s also true that many people with chronic pain are able to live productive lives because of these medications. And it’s also true that many people who need them are denied access because of unreasonable fear. Through my work with the U.S. Pain Foundation, I’ve seen up-close and personal what denial of access does to people in need. And I’m living proof that proper use of pain medication (narcotic or otherwise) can turn a person’s life around.
(And for anyone who’s keeping track, a quick reminder that there is a difference between physical dependence and addiction.)
After 17 years of life with chronic pain, I sometimes get activist fatigue. It’s exhausting to explain my experience over and over. It’s frustrating to have the same conversations repeatedly with folks who are convinced that all medications (and the people who take them) are bad. It can get me down to hear an otherwise reasonable friend say something like, “maybe if you just tried to have less stress you’d feel better?” I bet you’re tired of this crap, too.
But we need to shrug off that fatigue and keep talking. The Vox article was a great reminder that there is powerful research going on, that we can share with folks who think “it’s all in our heads” but not in the science-y way.
There are facts about prescription pain medication abuse that we can cite in our conversations, and we can also talk about how the American Medical Association—perhaps the most powerful medical organization in the U.S.—advocates not for the elimination of pain meds but for more comprehensive prescription standards and a public health-based, multi-pronged approach to effective pain treatment.
There is research that shows lost productivity due to pain conditions costs U.S. taxpayers more than $61 billion per year.
And we can keep telling our very personal, compelling, real-life stories that show how effective pain treatment can be, quite literally, a life saver.
So make me a promise, OK babes? Keep talking. When you get tired, take a break, but don’t give up being your own best advocate. Use resources from groups like U.S. Pain Foundation to fuel your efforts. Point people to facts whenever you can, because subjective arguments are not always as convincing as data. And never give up. I sure won’t.