There\’s a constant debate among the chronically ill: how much to disclose to your doctor. Most doctors don\’t like their patients to do their own research, which strikes me as abysmally immoral as most of my doctors have a tendency to do something like this:
When diagnosed with HPV in 2001, I went to the doc for an HPV test. She said I didn\’t need an HPV test, just a PAP smear, and that if two PAP smears come back abnormal (one every six months), then they do the HPV test. But, I already have had a wart, I said. Oh, okay, we\’ll do the test, she says. Calls me the next week when the results are in: yup, you have HPV. Okay, I said, what strains? What do you mean, what strains? I mean, do I have the high risk strains or the low risk strains, and how many? She said, I don\’t know… I didn\’t check the results. So she sent me to a gyno to have a full test run. Sitting in the chair at the gyno\’s office, post-exam, gyno said to me, so, you have HPV. Yup, I said. She said, now you have to start being careful about who you have sex with. Okaaaaay, I said. And which strains do I have? She got flustered and went through the papers, then started reading off the list: more then ten low, more then ten high; she didn\’t bother to list them all. She said, you get the idea. Just be more careful.
That\’s all my doctors have ever told me about having HPV… until they told me I would need a biopsy because my cervix was growing too many nasties. I didn\’t ask questions and they didn\’t explain; I just agreed. When the biopsy came back uber-nasty, they said I could wait another six months and see \”what developed\” or I could have a LEEP to kill off as many of the cells as possible as soon as possible. I went for the LEEP. They never bothered to explain to me what it was or how it worked. In fact, when I was naked from the waist down and on my back and inquired as to the exact name for a piece of the equipment they were using (the part taped to my thigh that grounds the electrical charge so that my cooch doesn\’t get shocked) the nurse got flustered and just repeated \”it grounds the charge\”; I don\’t think even she knew what it was.
To this day, none of my doctors have told me HOW HPV is transmitted (other than through sex, which is a given), THE RISKS, or anything else. So I don\’t even bother. And believe it or not, HPV is what my doctors are what my doctors are second most vocal about (allergies and asthma being the first). When it comes to something as obscure as a neurological condition, doctors don\’t say anything. The doctor who told me I had FMS literally told me I had it, told me I had it for life, told me there as no treatment and no cure, told me I\’d be feeling like this forever, and then walked out of the room. Me and doctors and their communication skills, we don\’t get along.
Most chronically ill patients who can\’t afford those uber-cush specialists seem to have this sort of experience. Even those with specialists often have this sort of experience. So heaven forbid you, the patient, should actually pipe up at the doctor\’s office and say \”I know X about Y and I am citing Z\’s study in the January 2005 issue of ABC as a source, and therefore I want to try Z\’s suggested treatment/therapy/approach of D,\” because if you do, 9 times out of 10 the doctor takes one look at you and basically says \”Don\’t tell me how to do my job.\”
Well, EXCUSE ME, but YOUR JOB happens to be working on MY BODY.
And no, I don\’t have even a high school diploma, but that doesn\’t mean I\’m dumb. And I\’m well past the embryonic stage of being in the first year of diagnosis and being willing to try any damn fooled thing on the internet or in a book. No, I\’m not there. I\’m reading goddamn Nature and Neuroscience and Pain and everything else I can get my grubby little fingers on through the wonders of access to Pub-Med through my boyfriend\’s account. (I will never date a non-research positioned person in my life ever again, so help me, this I swear.) And I\’m piecing things together and sometimes I\’m coming up with conclusions that even my fucking NEUROSCIENTIST boyfriend thinks are far more than probable but also extremely likely. But I can\’t get a doctor to work with me–just on me. Like a whore, except I have to pay my john; now what is up with that?
So Dr Maude and I came up with the idea that I would see this doctor at Hopkins like I\’m some sort of clueless fuck. Like I haven\’t been keeping personal health logs for years, like I don\’t know myself inside out, like I don\’t know a damn thing about neurobiology or chronobiology or neuropharmacology or anything except, \”hey, doc, I can\’t sleep and I\’m always tired and my body always hurts, so, can you help?\” And we\’d start out that way and then see what this doctor thinks, see what his plans are; the modus operandi. Both sides at once, plotting. I don\’t care about taking over the world anymore like I did as a teen, now I just care about being able to take over the care of my own body.
I was going to play the Hopkins dance, and then after a few weeks, \”come clean\” at a session, saying, well, I\’m actually interested in neuroscience and my partner is a neuroscientist and we\’ve been doing some investigating of our own. What do you think of X, Y, and Z? Now, can we collaborate instead of me being a guinea pig?
But it\’s not going to work, because my cover is going to be blown way ahead of schedule. Turns out my doctor is going to be at the Society for Neuroscience Conference in November, which I have been looking forward to since last year\’s and refuse to miss. I\’d already slotted several lectures on sleep into my schedule, and it turns out he\’s going to be on one of the panels as well as attending the others. Short of wearing a mask, I cannot hide. I can just imagine my next session after the conference: \”Oh, hi Dr Sleep… yeah, I guess I forgot to mention that if I had better control over my health I sure wouldn\’t mind being a neuroscientist of a sort… it really is a passion big enough to propel me to attend a five day conference at the DC Convention Center among a group of 30,000 stinky geeks from all over the world with nary a chair for me to sit on… yeah, I sure do love the engineered mysteries of the brain… oops.\”
Life\’s a humbug. All I\’m saying is he better not be turning up at the Society for the Stimulus Properties of Drugs because I\’m going to be prowling that shit like there\’s no tomorrow.
I always wondered how Dr Kay Redfield Jamieson felt when she came out of the bi-polar closet to her doctor-peers, and more than that, how did she ever find a doctor she felt was up enough on things to treat her, but not so up on things as for it to be awkward in a professional setting (such as seeing your doctor across the table from you in a conference)? I may never know.
