When I found one called "Negative and positive illness representations of rheumatoid arthritis" it made sense to me that there seem to be two groups among RA patients. "The smaller group (43%) ... has a negative representation of their illness, attributed more symptoms to their condition and reported stronger perceptions of the consequences, chronicity and cyclicality of their condition, and lower control compared to the positive representation group (57%). (I'm taking chronicity to refer to whether the issue is chronic or acute.)
I wanted to be sure that I knew what was meant by the term "illness representation" so I googled and found this definition on the site of the National Cancer Institute. It is the "patient's beliefs and expectations about an illness or somatic symptoms" and determines how you cope with the illness.
So in the article about RA it seems some of us are more negative in our feelings about it. And the ones who are more negative have "higher levels of pain and functional disability and, longitudinally, with increases in levels of pain, functional disability and distress."
That makes sense to me. It sounds as though the group with negative perceptions have good factual reasons for these feelings. Their reasons are based on facts and on their actual condition more than on their beliefs and expectations.
It upsets me when a physical illness is associated with feelings that patients may have about it and turned around to a perception problem rather than an actual physical problem.
It's important to treat the body and also the mind but I'd rather start with healing the body.
I also found a lengthy neurology article about treating patients with no apparent disease, where the problems are functional. It is almost a guide to What Not To Say To The Doctor in one section of this detailed article.
I found it at this link: http://jnnp.bmj.com/content/76/suppl_1/i2.long You may have to sign up for the BMJ to see it. (it's free)
This is great, Annette. This part especially spoke to me:
ReplyDelete"That makes sense to me. It sounds as though the group with negative perceptions have good factual reasons for these feelings. Their reasons are based on facts and on their actual condition more than on their beliefs and expectations.
It upsets me when a physical illness is associated with feelings that patients may have about it and turned around to a perception problem rather than an actual physical problem."
Sometimes it feels like doctors and other medical professionals have bought into this whole positive thinking hooey. If we say something is hurting, it's often attributed to our heads and our belief about the pain, rather than the fact that something is hurting and perhaps warrants investigation. I've dealt with this for over two years with the pain in my right abdomen.
Yesterday the doctor wanted to examine me and went to look at my back - I have told her the last few times that the pain is in the front, but she is still going with what the doctors said a year ago that it is neuropathic pain in my back. Now it looks like what is happening is I am getting gallbladder pain, and my whole body is tensing giving me increased fibro-like pain (myofascial pain), but the original pain may actually be signalling a problem!
Yesterday the doctor gave me morphine for the increased pain and suggested that we might start looking at my gallbladder. Hallelujah.
For two years they were stuck in this place that the pain is in my head, when it is indeed in my body.
Blessings,
Jane