I have a confession to make. I don’t really have Lyme disease. I have delusional meningoencephalitic spirochetemiosis. It’s this thing I made up as a coping mechanism to deal with the stress of having a disease that doctors say is bullshit. They tried to send me to a shrink, but I said, “Oh, noooo, you’re not going to peg me as a psych case. I can make up DSM lingo just as well as any Ph.D, and save a whole lot of money.”
I don’t like to talk (write) about my personal Lyme journey, AKA sob story about how I became this badass sick but *not* sick writer of DSM disorder names and descriptions.
Idiopathic retinopellucid paralogism syndrome: unexplained ability to see through bullshit. Yeah, doctors: I call bullshit on your calling bullshit. Put that in your DSM right next to hippocratitis of the paycheck: pretending to uphold the oath of first-do-no-harm in order to pay for the MD degree and a Lexus.
Having Not-Lyme for 20 years has certainly had its ups and downs. Once, in a pretty bad flare, I almost died in childbirth. That kinda sucked, considering I was at one of the top 50 hospitals in the country for birthing babies. Luckily, though, the only diagnosis I had at the time was pregnancy exacerbated by oldness-induced preeclampsia with a side of group B strep. Insurance covered it, whereas anything having to do with the L word would have negated all coverage and potentially even the pregnancy itself.
Other times have been not-so-life-threatening. Like when the rash on my hands gets oozey and I’m not quite sure whether I can get away with a cute giggle-and-a-wave, versus a full-on handshake. It’s for your protection as well as mine; I don’t know where your hands have been, and your chocolate might get in my peanut butter, so to speak. Likewise, you probably don’t want my peanut butter somatoform ulcerative dermatofeminosis disorder getting in your chocolate. I wouldn’t want to be responsible for your very real heart failure upon seeing the pretend scourge that you just shook. Hand sanitizer can be very drying. I’ll save you that discomfort and play it coy.
Not-Lyme is downright hilarious sometimes. Like when I can’t remember a word mid-sentence, and an awkward pause turns into a millennium, in conversation-years, and the panic of not being able to retrieve the word actually prevents the vocalization of any word at all, until, “HAHAHAHAHA, senior moment! LOL! Do I smell bacon and eggs, or is that a brain fart?” Neuro-porcinovumethanalgia.
Something else that’s funny is that it’s been more than two years since Thomas Insel, M.D., director of the National Institutes of Mental Health (NIMH–yeah, like the Rats of NIMH. Who says the government has no sense of humor?) debunked the DSM. http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml
“In a few weeks, the American Psychiatric Association will release its new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This volume will tweak several current diagnostic categories, from autism spectrum disorders to mood disorders. While many of these changes have been contentious, the final product involves mostly modest alterations of the previous edition, based on new insights emerging from research since 1990 when DSM-IV was published. Sometimes this research recommended new categories (e.g., mood dysregulation disorder) or that previous categories could be dropped (e.g., Asperger’s syndrome).1
The goal of this new manual, as with all previous editions, is to provide a common language for describing psychopathology. While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment.”
He basically said it’s a load of crap because nothing in it is based on valid biomarkers of real illness. In other words, the dudes in white coats who accuse us of creating illness with our active imagination, have created illness with their active imagination–to the detriment of anyone with real, valid, organic illness signs that medical doctors are too dumb or brainwashed to diagnose.
Insel was careful not to make too harsh an indictment against his profession. A real thrashing might have caused another economic recession, had the funding been pulled from all the psychiatric drug trials going on all over the country at thousands of highly respected research institutions. Like this one, for example:
“Researchers chafe at halt of psychiatric trials: After external reports blast ethics practices, University of Minnesota stops drug-study enrolment,” by Sara Reardon for the journal Nature.
“This unpredictability leaves researchers in limbo; they fear that some research could be ruined if the suspension is not lifted soon. Four of the halted studies are led by psychiatrist Suma Jacob, a researcher into autism who joined the university in 2012. One of those studies, a trial of an intranasal spray containing the hormone oxytocin, has enrolled far too few participants to draw meaningful conclusions. If the moratorium stretches into the summer, Jacob says, her supply of the expensive drug will expire — and eventually, so will her funding. “We’ll have to just let it go,” she says. That will be disappointing to a number of families who were hoping to enrol their autistic children in the study, she says. Both she and Cullen say that they were aware of the controversy surrounding the Markingson case, but had never expected it to affect their own work.”
Just imagine the worldwide economic catastrophe we could be in right now if all the autistic kids and clinically depressed people in all the ongoing trials had been deprived of their experimental mind-altering pharmaceutical therapeutics. Pharm money makes the world go round, after all. Psychopharmeconomosis.
Anyway, I’ve noticed that some doctors seem to have gotten the memo, while others have not. Example: I had a primary care doctor who spoke to me as if I was a four-year-old. Right after telling me there was nothing she could do for my fatigue, pain, cognitive dysfunction and rashes, she said to me in her syrupy Romper Room voice, “Maybe it would help if you had someone to talk to.” She handed me a name on a Post-it as she scuttled me out the door.
The next time I went back to her I made her record the locations, dimensions and appearance of all my blistery, red rashes and demonstrated my wacky finger trick where my middle finger (purely coincidentally) spasms uncontrollably if I hold it a certain way. That earned me a neurologist referral and an opportunity to never see this wanna-be pre-school teacher again.
The neurologist, of course, was too much of a wuss to outright dismiss me, and apparently had heard that I was not going to fall for the “someone to help you cope with your fear of illness” (infirmaphobia) referral. She proceeded with expensive testing and instead tried to refer me to a rheumatologist for apparent arthritis of the brain. (Which, technically, would be encephalitis, which would fall under her specialty more than a rheumy, but whatever.) She had that deer-in-headlights look, as if the removal of the psych-referral safety net had left her in free fall, grasping for whatever non-psych specialty her little testing-technologist-brain could think up.
So, yeah, that’s pretty much my story of having delusional meningoencephalitic spirochetemiosis for 20 years. I notice that it’s these personal stories that get shared around a lot, for, you know, awareness and stuff. Feel free to share this. Everyone should be aware of delusional meningoencephalitic spirochetemiosis, but also neuro-porcinovumethanalgia. That one is very serious. Let it go and your brain could end up fried.