Biology or Behavior?

I am reading an ethnography [1] 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…

[1] Under the medical gaze : facts and fictions of chronic pain / Author: Greenhalgh, Susan.

3 thoughts on “Biology or Behavior?

  1. I really appreciate your thought process on this. I too have been thinking a lot lately about the relative roles between biology and behavior in my own process with lyme. I think many of us have had way too many “experts” tell us that our symptoms were all in our heads, when it clearly was not. This is something that I, like many lyme patients, have a lot of pain and past trauma from.

    It’s interesting because lately I’ve been swinging the other way and while I know that lyme disease is having a HUGE effect on my life, and is responsible for a great deal, I sometimes wonder if I relegate too much to this disease. It’s hard to know at times. We talk about lyme fog, lyme rage, depression, etc. And, all these are clear symptoms of lyme.

    But, sometimes I wonder what is the lyme and what is me. Clearly I have a responsibility to process my issues and become a better person. Treating my lyme won’t change that. Often people are depressed because there is something painful that they need to explore. But I also can’t ignore that the lyme itself has an effect on my emotions. Sometimes I wonder if that is used by some of us to cover up our own needs for emotional healing, etc. though.

    I think in the end, your concluding thoughts are helpful to me. Why does it need to be JUST lyme, or JUST my own “stuff”? That is based in a dualism that isn’t ultimately helpful most of the time. The key is in not hiding the truth of either. Not ignoring the clear biological influence that a brain infection will have on a person. And also not ignoring that individuals have power in their lives and are influenced by events around them. Awareness is key.

    Thanks for your stimulating post.

  2. Hello there,

    I am so enthused reading your blog and post and it’s the first time I have posted anything so thank you for the opportunity to respond. As a business person, I am used to dealing with many complex issues and personalities as listening to reason and intelligent arguments to arrive at a positive end result.

    Imagine when I started to fall ill suddenly and watch my life disappearing like sand falling through the fingertips. I didn’t have the personality to quit. I wanted answers but I was already exploring from the clinical and also emotional/cognitive side of my symptoms before I encountered the medical profession because simply that’s me. I have always been that way.

    Being seriously overworked in a hostile environment, the pain and myriad of horrendous symptoms reading like a shopping list and getting bigger were simply envoking thoughts of “burn out and stress”. Sounded rational. Then the Fibromyalgia diagnosis came and I threw myself into the regime of chronic pain management and cognitive therapy and alternative treatments.

    You know where this is going right…?

    Then along came a spider…. a bite.. an immune system flare up like never before and there it was in my blood test results and clinical diagnosis. I had Lyme… bitten by a tick in my past. The name doesn’t matter, it’s the fit. I don’t need to have the Dolce & Gabbana of illnesses just to work out ok, so how do I win my life back.

    Now in relation to your posts. Whilst under the sole “FMS” diagnosis, I did a lot of work on “what was intrinsically me, my make up as a person” and I had a multi layered strategy which meant looking at each area as a weak link which simply needed strengthening. I made improvements some small, some bigger in terms of acceptance and some are still very much ongoing.

    These personal improvements now coupled with the anti biotics for Lyme, the physical and cognitive therapy and meditation for FMS and Lyme with some pain killers in reserve and the inherent approach that in helping myself to be a better person, confronting the weaknesses or misfirings of my inner self is my strategy for recovery. All, as the patient go hand in hand.

    Somehow after 18 months terribly sick, loss of career, social life but not my mind (fog yes, migraines yes, burning yes) with the additional diagnosis in tow (diagnosed with late Lyme just 2 months ago) some days remain dark but I can also see a light twinkling away in the distance. Moreover, from all the things I have learned about myself, I feel empowered to own my own recovery and to seek additional support when needed. In my darkest pain moments, I simply write. All these elements fit into my support network which I have labelled “Team Callie”. I enter each medical discussion with this drawing and it is no longer about me sitting opposite a doctor but gives the doctor the indication of where he fits into my world as one of very many pieces. It’s is interesting how much more seriously I am taken now with this approach because it de-sensitises the “responsibility versus expectation” argument and moves you straight to “action and next steps”.

    Thanks for giving me the platform to voice my opinion. All the best with your recovery to anyone suffering x thanks again for the stimulating post x

  3. Wow, what interesting comments. Thanks to both of you for sharing your thoughts on this! I wish I had deep responses to share but I’m so busy with work this month (biggest deadline of the year) I’m brain dead for anything else! :)

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