I Feel Your Pain (not)
A tweet hit me on Sunday evening, from a stranger:
I’m saddened by how many ADULTS can’t get their #rheum 2 understand the level of severity of their pain.What hope is there for my daughter?
I half-watched an on-line exchange about the issue, and then went about my family’s dinner preparations.
The message came from Amy Cunningham, who blogs about her daughter’s experience with juvenile rheumatoid arthritis and uveitis to the starting tune of Van Morrison’s “Brown Eyed Girl.” I couldn’t bear the tracks that followed, playing automatically and disjointedly in multiple browser windows, so I shut them off. But I kept on thinking about the girl’s pain, and the mother’s despair.
I wasn’t alone in that. Turns out that Rheumatoid Arthritis Warrior Kelly Young (@rawarrior) was all over the matter. She’s got a Facebook discussion going on the topic and a post today called Some Rheumatologists Don’t Understand How Much It Hurts.
The problem of doctors dismissing patients’ pain is very real. I know this from my own experiences, like when I fell on the icy sidewalk and broke my right arm in the midst of breast cancer treatment. My elbow became gigantically swollen because my platelets were low – a side effect of the chemo – and as a consequence of a non-steroidal anti-inflammatory agent I was taking for back pain. In the E.R. the doctors gave me enough pain meds only after I’d been made to feel humiliated by some of the staff. Another time, after a 10 hour back surgery in which the orthopedists cut a steel rod fused to my spine and otherwise manipulated that column of nerves, the anesthesiologists laughed in the recovery room, hinting that my pain was due to depression.
How wrong they were –
Medicine is a very macho profession. For the record – when I had my wisdom teeth removed, I had them all taken out at once and returned straight to work in the lab. I drew my own blood for experiments with lymphocytes, countless times. Once I inserted my own intravenous catheter, while pregnant. When my spine started to crumble, I had trouble acknowledging the pain for several years. I felt embarrassed, compromised by it. In the year before surgery, I had a CT myelogram (which involves a lumbar puncture), went home and prepared for a journal club presentation the very next day. And so on. Only later, when I could hardly walk, I mentioned my limitation because I needed to cut back on my time standing while on rounds at the hospital. Some colleagues were sympathetic, but others were less generous.
Being tough has its merits. But denying pain, or suggesting that people who complain about their symptoms are weak, is not helpful to anyone. Pain can be very real, and disabling.
I think the problem for some doctors is one of arrogance; they perceive pain as something that happens to “others” and not to them, as if it were a sign of weakness or a character flaw. For some, the denial of patients’ pain may be some kind of strange defense mechanism, a psychological device by which they distance themselves from those affected, and so it might seem like it couldn’t happen to someone like them.
I was glad to read this post.
There are 2 very important aspects of this discussion: the way patients have to manage/disclose the pain and the way which doctors respond to it.
Many patients deal with pain in the way you have. It is actually quite typical in RA for patients to be stoic and even secretive about their pain. Recently the first large study of the subject showed 68% of RA patients conceal pain ( http://rawarrior.com/how-pain-affects-the-lives-of-women-with-rheumatoid-arthritis/ ). This is supported by the contact I have with thousands of patients, including the children. That is the sad irony: little girls like Amy’s daughter try hard not to complain.
The second topic, how docs respond, is a topic which I’ve addressed a few times since it seems to be particularly important with RA / JRA for 2 reasons. First, there are not tests which can reliably measure disease activity other than patient questionnaires (which are remarkably reliable actually as one prominent rheumatologist has demonstrated: http://rawarrior.com/weight-of-patient-reported-outcome-measures-on-diagnosis-treatment-of-ra/). Second, since the symptoms are “invisible,” some find them easy to disbelieve or dismiss. There is even evidence that in rheumatology, doctors are trained to do this (http://rawarrior.com/rheumatoid-arthritis-doctors/). I was excited that there was a group of presentations at the American College of Rheumatology in Novemeber “ACR REF Clinician Scholar Educator Lecture” by those doing studies on increasing humanism and understanding of the patient experience in rheumatology.
Thank you for bringing up this important topic on your blog.