I am reading an ethnography  right now written by a woman who was misdiagnosed with fibromalgia. She discusses the way in which her doctors’ view of her and her symptoms defined (and destroyed) 8 months of her life. In the end, she is “saved” by a doctor who argues for the role of culture, gender, and other similar forces in her symptomatology, points out that some of her symptoms may be side effects of a medication she is taking, and that others are likely caused by her other diagnosis, which is an arthritic disease. The author benefits from this redefinition of her diagnosis and regains much of the lost quality of life caused by the fibromalgia diagnosis.
Although I have only read two chapters so far, I have a number of reactions to this ethnography which I think are relevant to the experience of Lyme disease. First, I want to provide further context for my thoughts by discussing the differing import of “behavior” (and culture) and “biology”in the patient/doctor relationship. I should also note that these thoughts are not (yet) buttressed by a study of the literature, and that all of these concepts (behavior, culture, bias, etc.) have probably been thought through in ways that would inform this argument. I figure, for a blog post, it’s ok to not have defined every term or read about every existing theory, but forgive me if I am vague or inconsistent.
Behavior, which I broadly define to include attitude, habit, chosen activities & so on, it seems to me, is seen as something under the patient’s control. It may be changed (there are therapies for this), and may be blamed for things that have a deeper cause (such as an infection). If we expand our definition of behavior to allow for the influence of culture (in the negative this may include bias, sources of stress, unquestioned assumptions, and so on), we have sufficient grounds to explain any number of symptoms. Historically, especially for women, this is a common “solution” to unexplained problems (think of hysteria and the related practice, hysterectomy, or the dismissive comment that Lyme patients may hear “it’s all in your head”).
Biology may be equally problematic, especially when the wrong cause is blamed for something, leading to incorrect medications that may in fact make a condition worse (which happened to the ethnography’s author, and happens to Lyme patients misdiagnosed with, say, rheumatoid arthritis and given steroids that depress their immune system and allow the Lyme to run rampant). Even when it’s right, the doctor may apply biology to the problem to the exclusion of other forms of support for patient quality of life that focus more on behavior/culture/etc.
In the end, though, the abuse of “behavior” as an explanation, just like the act of wrong diagnosis, has an insidious and potentially harmful effect on the patient. I still remember being told “aren’t you a little young for that” when I reported my hearing loss to my PCP long before my diagnosis. That comment invalidated my experience, caused me to drop the subject of hearing loss (leading to an incomplete picture of my symptoms) and slowed down my attempts to pursue a diagnosis (hearing loss would have been a much stronger warning sign had I and my doctor taken it seriously than my generalized fatigue and ill health). Later when I suffered from tinnitus, I was advised by a friend to explore behavior modification therapy that would reduce it’s impact on me. Reading the therapy’s description I had the impression that tinnitus was seen as a problem for me only because I allowed it to be a problem. I realized today that sometime in the last few months it disappeared on its own. NOT because I acclimated to it but because it really is gone.
Let me pause and revel in that fact for a moment. I didn’t notice it go, but I couldn’t fail to notice it when it was present. A constant, multi-pitched, variable sound that affected my ability to sleep, go back to sleep, concentrate, hear. The loss of silence. These were major issues in my life, and the only therapy available to me was to try to get used to them. What a difference a cure is from simply learning to suffer with more grace or focus elsewhere. It reminds me that we can and should not attempt to equate the two — cure is not the same as increased stamina and better management. And when those are the only option, let’s honor the person who succeeds at them, and still respect the person who does not. They are both running a marathon.
I must stop to acknowledge the very real physical effects that stress, depression, and other mental (and behavioral) issues can have on a person. I am not questioning the fact that both behavior and biology play a role in our daily experiences. But reading that ethnography I want to shout at the author: Haven’t you just accepted yet another incomplete answer? And of course, I am influenced in this by my own biases — she reports arthritis, and fatigue, and pain, these are classic symptoms of Lyme disease! I want to ask her: can’t there be a biology and a behavioral component to your experience, and isn’t it worth exploring both, on your own terms, without allowing either to invalidate or worsen your experience of your illness?
I’m not sure what to conclude here: Perhaps I will simply end with the observation, based on personal experience, that when an expert imposes the opinion that either biology or behavior is at fault for a person’s ills, this has a big influence on both the patient and the expert. This effect is compounded because the structure of the relationship between expert and patient make the opinion hard for the patient to contradict. On the other hand, when the patient comes to their own conclusions about the relative value of behavioral/medical therapies, and the role that biology or behavior have in their illness, there may be less risk that the wrong things are simply swept under the rug. How might the doctor/patient relationship need to change to facilitate this? Do patients want the responsibility of coming to their own conclusions? How else might we solve these problems? As usual, I have more questions than answers right now…