These last two chapters (Part Two) were entitled "Burden of Proof" and covered the dilemma face that many of us as patients when living with invisible illness. In the seventh chapter, she tells of gaining insight into the "self-blame" she was beginning to lean towards as a result of her on-going pain and frustration with her doctors. One particular incident was with a therapist she met to help her "distinguish what was a "normal" reaction and what wasn't" in relation to her developing depression. The exchange between them about using the internet to seek information and support, back in 1994, was perfect. I had a similar experience talking with someone who is also not very internet-saavy (even these days) and the challenge to explain the value I found in speaking with these faceless voices led her to question my decision in using a machine to communicate in the same way Paula's intern therapist did here (83).
In the news lately, there has been some noise about taking a closer look at regulating pain medications. As one would expect, Kamen points out the hypocrisy in being prescribed pills to address our medical conditions as a replacement for the medical community's inability to explain the cause, then being judged as a person "seeking" pills to avoid the 'real problems.' Without a doubt, many doctors do resent their position in dealing with patients living with chronic illnesses because we will never 'get better.' They have no answers, we want answers, pharmaceutical reps want commision, and the rest simply shake their heads in frustration because our pain is SO obviously stemming from something that is "all in our head."
I think Chapter 7 (The "Pleasant" Patient) really creates a good argument about how our society has taken the invisible nature of pain and uses modern medical technology to develop bigger hurdles for us trying to gain understanding from others and further supporting the idea that if it isn't seen, then it must not be real. This reliance on evidence-based medicine may help with the development of trying out new pharmaceuticals in treating symptoms (Note: not cures), but it has also upped the anty in trying to get western medicine and others to consider that there are some things that are still very real even if we can't see it with the latest technology. Kamen mentions work from Susan Sontag about how much more easily a medical condition can be addressed as a metaphor when the cause or the cure of this condition is "unknown." We with lupus experience this phenomenon, since we still do not have a cause, specific diagnostic tests or treatments and lack of consensus within the medical community about who gets lupus and who gets "real lupus." (Note: I recently went to a community presentation where MY OWN RHUEMATOLOGIST indicated that "...caucasian women don't really get lupus. Only women of color - particularly African American women." I had been seeing him for about eight years at that point and I'm as white as they come. Boy was he surprised to see me walk up to him.) With breast cancer, you see the tumor. With lupus, we just need more exercise ..."because there doesn't seem to be anything wrong." Right?
I stopped reading after I got through Chapter Nine ("Hysteria" and The Founding Fathers) because I was overwhelmed. I recognized the material she presents, because I received a B.A. in Psychology and Sociology before lupus. Reading it again as a patient was a new experience for me and I couldn't help but remember my perceptions as I read about hysteria, rest cures, personalities, Freudian psychoanalysis and the use of gender in determining the treatment options. Her historical review of founding 'pain theorists' was great, albeit frustrating. Freud is Freud, but she's right about some of what he said actually wasn't just about a cigar. The books she has used in her research now are a must read list for me, to learn more about where we've been that may help define where we need to go as the heatlhcare system in this country emerges in the next decade. She closes the chapter by indicating through all of the theories, doctors she visited, emotions she was experiencing, pills she was trying and avenues she was seeking...the recognition that not only are the individuals experiencing pain or illness unique, but so, too, are the variables that actually influence the experience itself. Biopsychosocial model in addressing pain seems so common sense to me and she, too, is heading towards a more multidimensional approach towards finding her way out of her pain. Alternative or complimentary medicine focuses on a more 'whole' health framework and this is where we head for the next chapters.
Here are some questions I have that I wrote in my margins:
Paula states something that I'm sure hit home with you as it did with me on Page 83: "...you should have seen me then." If you actually had a few minutes to describe to your doctor who you used to be, as a way to keep the doc from using your current health state in defining your "nature", what would you say?
Kamen mentions a character from Siri Hustvedt's novel The Blindfold (1992) where she tries to conceal her illness from her physician in order to not be viewed as someone "going to pieces." Have you ever minimized your pain or symptoms in order to show your doctor you're doing 'fine' as a way to gain his/her respect? What did you think of the "Gentle Tips to the Headache Patient" on page 103? I loved it - and am glad I live now rather than then. I would've hurt someone if they were to give this list to me.
This leads me to asking if you could have possibly gone through Weir Mitchell's "rest cure" treatment, on page 100? As I read about his belief that require strong male guidance in order to maintain a healthy "female intellect", I couldn't help gasp. He theorized that women suffered pain more so than men because they weren't remaining true to their traditional natures and boasted about how his use of a placebo only proved how susceptible women are when told a pill would calm their symptoms. If you haven't seen the movie "The Birdcage", you should. It shows a comical example of this comical theory that women become addicted to pills because, well, we're women. Nathan Lane's character may have been male, but I think Weir Mitchell would still feel vindicated as 'Albert' gratefully sought his "pirin" tablets as the only thing that helps him get through his pain.
Finally, with regards to migraine personalities (102) and "illness lifestyles" (107), did you find yourselves fitting anywhere here? Did any of you have to admit that you did? I hear many lupus patients refer to themselves as Type A's and use that as the reason they "probably have" lupus. What do you think about using psychology to help define your health challenges? Does it help or does it hinder your conversations with your medical providers, your family or friends? How does it affect your perception of yourself on the good and the bad days? Does it differ?
I kinda got a little long winded. Let's aim for the next four chapters (to Chapter 12). Chapter 11 is only one page. Hope to hear from you on any of what I'm writing next Sunday!
