The type of pain associated with moderate-severe RA is comparable to bone cancer.
This is a quote from a recent post by Vanessa Collins on HealthCentral, an interview with Mischelle Jackson, who lives with RA. The source of the quote is Mischelle’s rheumatologist. And it has been reverberating in my mind since I first read it a week ago.
I have never heard anyone compare RA pain to any other pain. It makes sense, though. This lifts pain out of the very individual and problematic 1-10 pain scale. A scale which, exactly because of its individual nature, does nothing to convince doctors that your pain is very real and is indeed that high. Assigning an arbitrary number that varies from person to person — and varies from experience to experience within one person — feeds the notion that high pain equals the person not coping well with the pain (as opposed to being a really high level of pain). And so, catastrophizing enters the picture.
Yes, that again. I’ve shared my feelings about that concept before more than once, but let me recap. It is a term used to describe the way people with chronic pain deal with their pain. Or rather, not deal with it. It’s a concept used in medicine and medical research to indicate that a person worries a lot about their pain, magnifies the pain and its impact and includes a feeling of helplessness. Which to most people who actually live with chronic pain sounds like a pretty normal response to high levels of pain. Right? I do think that there is such a thing as coping well and coping not-well with pain, but I also think that medical professionals labeling certain statements and emotions as catastrophizing is condescending and patronizing and shows complete lack of empathy.
Me? Opinionated? Whatever makes you say that…
Many rheumatologists don’t prescribe pain medication. They tell their patients that they treat inflammation and that if they treat the pain, it will mask the inflammation, making it impossible to see if the disease is responding to the meds. This is a good point and works well with the increasing number of people whose disease response to the medications that are now available. But some don’t. And what about them? They may be referred to experts in pain management, but there aren’t enough of those. Some areas have no pain specialists, others have a few, but the waiting lists are so long that you can wait a year or more to get in. This leaves people with few options. Some are lucky when their family physicians step in and fill the gap. However, family doctors are not pain specialists, may not know what is available or may not be comfortable prescribing narcotics. Leaving the person without effective pain control.
And this is where I start asking questions. Such as, is it ethical to not treat RA pain? Is it ethical to say “not my specialty” and move on, leaving the patient with a huge, unaddressed problem? A problem that prevents them from having any meaningful quality of life and may very well contribute to depression or suicidal thoughts. Let’s put it in perspective: what if an oncologist said that they treated cancer, not the pain that is caused by the cancer? Would that be acceptable? Or would it be seen as a failure of their duty as a doctor, even cruel?
Perhaps catastrophizing — or shall we call it not coping well? — is so much of it a player in the chronic pain field because people do not have cause to feel confident in dealing with their pain. If your doctors won’t treat it and you can’t access the specialists that can treat it and teach you how to live with it,what reason would you have to feel confident in your ability to cope with the pain? And would this not cause you to worry about your pain, feel that is taking over your life and make you feel helpless? Perhaps the issue is not why people who live with RA catastrophize. Perhaps the more pertinent issue is why health professionals minimize the pain we experience.
About a year ago, I asked why the first step when diagnosed with cancer is to see an oncology social worker, but people who are diagnosed with a chronic illness like RA are sent on their way, expected to cope on their own. The same question applies to pain management. Oncology includes a knowledge of treating pain or at the very least having a specialist on staff who is an expert in treating cancer-related pain. Why do rheumatology departments not do the same?
Dr. Edward Keystone, a leading Canadian rheumatologist, calls RA “a medical emergency.” Perhaps it is time that the field of rheumatology starts treating it as such. This doesn’t just include early and aggressive treatment to enhance the possibility of going into remission, but also an awareness of the reality of living with RA and the impact it has on your life. Each rheumatology department at every hospital ought to be one-stop shopping. You see the rheumatologist, get a diagnosis and a prescription for medication. Before you leave the office, you will also have a referral to a social worker who can help you adjust to your new reality and connect you to community resources who can help when you need it. If you do not respond to medication or have moderate to severe disease, you get an automatic referral to the pain specialist who is part of the clinic.
What other services would you include in rheumatology clinics?
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.