I've been thinking. And what with being on vacation, there's actually been mental room to move some ideas around, played connect the dots and whatnot. Settle in, this is a long one…
More specifically, I’ve been thinking about catastrophizing. This is a concept discussed in the field of rheumatology. The concept states that people who have RA pain tend to exaggerate reports and worries about pain and its impact, leading to poor coping styles and depression. One article says “disease severity (as measured by 'objective' indices such as those that employ radiography or serology) is only marginally related to patients' reports of pain severity.” Many others investigate catastrophizing in various contexts, emphasizing its relationship to depression, hopelessness, anxiety, passivity in coping with pain and on and on. In her discussion of catastrophizing, Kelly includes a couple of examples of what this may be. For instance, "this is the worst pain in the world" and "how am I going to take care of my baby?"
So much of the discussion within the medical profession on the issue of pain and catastrophizing veers towards minimizing the pain experienced by the people who live with RA and other conditions that involve chronic pain. And this may be the point when someone in the medical version might think that I'm exaggerating for effect, but consider this. The November/December issue of WebMD Magazine (p.32-34) says RA pain "is usually not severe, but more chronic and dull" (thanks to Kelly for the heads up). Because apparently severe and chronic are mutually exclusive? In the same article, they mentioned that a "general rule for all the therapies is the rule of thirds: a third of patients will get much better with a particular therapy, a third will get somewhat better, and a third will not improve at all." Which – connecting the dots from one statement to another - must mean that uncontrolled RA doesn't hurt that much, right? So it can’t be that serious, right?
I am four, beyond the age for strollers, but still, my mother is pushing me in one because my left ankle has swollen to the point where you can't see the bones. I am nine, crawling from my bedroom to the kitchen to get my medication, because it hurts too much to walk. I am 12, lost in fever hallucinations as my heart and my liver become inflamed and my lungs fill with fluid and I almost die. I am 14, crying in a dark hospital room, the pain in my shoulders taking my breath away. I am 41, crying in the shower every morning because the pain in my entire body is taking my breath away. And I am also 41 when the disease flares so high and so hot that the pain drives me close to suicide.
And that’s just one person’s experience.
RA pain can be sharp, pounding, throbbing. It can feel as if you are rolling around in slightly dulled - but not dull - glass shards, as if you're being stabbed with an ice pick, jolted with electricity or as if someone is inserting a very thin blade between the bones in your joints and working diligently to pry them apart. It’s exhausting, covering every part of you in a grey film, affecting everything you do. It can be manageable for a while, only to flare unpredictably and randomly, taking control of your life. With uncontrolled RA, you never know how you'll be feeling tomorrow morning (or this afternoon, for that matter).
RA pain is not dull. Most people would not describe their RA pain as "not severe." Yet the literature - and many in the medical profession - persists in minimizing it and continue to question the reports of the severity of the pain and the extent of its impact from those who live with it. They call our reports catastrophizing.
So I thought some more and decided to play with the concept. Let's take the disease out of it for a minute.
Say you’re going about your life, doing whatever that entails. Randomly, forces beyond your control will swoop in and take over. They will roll you in slightly dulled glass shards, stab you with ice picks, jolt you with electricity and insert slender blades into your joints, wiggling them to pry apart the bones. Then they go away, leaving you to heal and try to pick up your life again. But it's not the only time these forces take over your life. They come back intermittently - maybe tomorrow, maybe next week, maybe not until two years from now. They stay for a few hours, days or months or years. You never know.
What else does that sound like? To me, that sounds like sudden arrest, imprisonment and torture. The kind you read about in Amnesty International bulletins, stories from dictatorships around the world. There are programs for victims of torture to help them recover, physically and emotionally and we all understand that such people are likely to need help to heal and may even have PTSD.
Am I saying that having RA can lead to you developing PTSD? No, I'm not. I do not know nearly enough about this condition to offer any sort of intelligent analysis. I’m not actually talking about acts of torture at all except to say that people who are victims of torture deserve our help and our resources in fighting the regimes that torture.
What I am wondering about, though, is why people who live with a chronic illness, who are enduring intense and life-altering pain, are expected to suck it up when others get understanding and help? Why are we doubted and our experience minimized? Why is our reaction to our pain shrugged off as a “poor coping style”? Why are we, by some members of the medical profession, expected to address the pain and the worries about it with the powers of our minds instead of painkillers? And if we do ask for drugs because we'd like to be able to live our lives, some doctors will refuse to write prescriptions for narcotics. The medications that may control the disease don't always work and when they don't, it is termed that “you fail the medication”, not that the medication fails to work for you. And all of this together contributes to an unseemly focus on our responsibility in controlling a disease over which we have no control.
So, dear medical profession. Unless you are willing to develop a chronic illness yourself to lend a first-hand knowledge of the thing which you are treating, you must stop this belief that people can’t be in as much pain as they tell you they are. You must stop the automatic discounting of their experience, stop calling it this catastrophizing. You must think about this thing separated from the disease and think about what it might mean and might do to a person. You must think about how you would feel if you were in their shoes. And then you must link it back to the disease which you are treating. For someone who is relatively new to RA, this may very well be "the worst pain" they can imagine. And for someone who is living with uncontrolled disease activity, wondering whether they'll be able to take care of their baby is a legitimate concern. Instead of making their feelings about their lives into something dysfunctional, you must listen and address it. Give them the pain meds they need, suggests resources that can help them with parenting. Tell them that you are on their team and will fight as hard as you can to help them get better.
In other words, you must have respect and imagination. If you do not, you are not a good doctor.