In a perfect world, all doctors would know that people with psychiatric issues are regular humans, just like everybody else. They would not look at our diagnosis, our health history, our med list, and automatically assume that we are drug seekers. They would not automatically write off our symptoms as being “psychosomatic.” I use quotes there, because the word “psychosomatic” means that the mind is causing a disorder that is expressed by the body. I happen to be of the school of medicine that believes that virtually all physical illness is caused, ultimately, by imbalances of body chemistry that are initiated in the brain; therefore, all illnesses are “psychosomatic.” And guess what, folks: they’re real illnesses.
Unfortunately, most doctors are under the impression that if you have a DSM diagnosis, that automatically puts you in the category of “crock,” which means your symptoms are completely invalidated from moment one. Oh, by the way, “crock” is medical-ese for “crock of shit.” Nice, huh?
Let me give you an example.
In 2009, I became very ill with Cytomegalovirus. My immune system crashed, and all sorts of viruses that had been happily sleeping in my body (like the herpes cold sore virus) elbowed their way out. The virus infected my small intestine, which caused a malabsorption syndrome. My body could not absorb nutrients. I lost 25 pounds, became anemic, and spent half of every day on the toilet while whatever I had eaten the previous day made its way out.
I had no pain, no cramps, no bloating, no urgency.
Those are some of the the symptoms of Irritable Bowel Syndrome. I didn’t have any of them.
Weight loss and anemia are things that completely rule out IBS; yet every gastroenterologist I saw, as soon as they glanced at my med list, immediately announced that I had IBS. It didn’t matter to them that I was gaunt as a ghost, barely able to walk to the bus stop near my house.
I don’t mean to downplay the seriousness of IBS, not in the least. It is a terrible illness, as those of you who suffer from it know all too well. But after my personal experiences, I began to wonder how many people are labeled with IBS, which is said to be incurable and mostly untreatable, when they in fact have physical illnesses that go untreated because of–you guessed it–stigma. How many people are walking around with treatable illnesses, like giardia, lactose intolerance (did you know that most of your pills are made with lactose? It’s what holds the pills together), fructose intolerance (juices and fruits), bacterial overgrowth syndrome…the list goes on.
But I am a pediatrician. I think like a pediatrician. I walk and talk like a pediatrician. And we have a saying among ourselves: If it walks like a duck, and quacks like a duck, it probably is a duck.
I had malabsorption. I also had frequent sinus infections. And I was born with pneumonia, which I have had many times since.
It all adds up to one thing: Cystic Fibrosis. CF was once thought to occur only in children, and it was lethal. No one with CF lived past their teenage years. The combination of malabsorption and lung disease, and the resulting immune deficiencies, lead to their tragic death in childhood.
Nowadays more and more adults are being diagnosed with “mild” forms of CF. And kids with CF are, thankfully, living well into middle age, thanks to new medications.
So I demanded a sweat chloride test, which is the “gold standard” diagnostic test for CF. Guess what? You guessed it: it was positive.
Seems to me that my body was coping pretty well with the genetic illness, till I got sick with the CMV, which destroyed my intestines’ ability to absorb nutrients. That was the proverbial “straw that broke the camel’s back.”
Luckily, there is medicine for the malabsorption. Digestive enzymes extracted from pigs’ pancreases (yuck), taken with everything that goes into the mouth (except water), fixed my problem entirely. I gained the weight back, and the anemia is slowly going away. I poop like a normal human being.
But I had to kick and scream and generally make a pain in the doctor’s ass before she would prescribe the medicine for me. And I had to tell her that I understood that this was “functional” (medical code word for “not real”) before she would write the script, as if she was placating a petulant child–regardless of the fact that my CF test was positive!
Psychiatric illness triggers a switch in the brains of too many medical personnel that immediately pigeon-holes us into the category of people whose physical complaints are “all in their heads.” Believe me, I have seen it from both sides of the white coat.
When I was a young doctor just starting out, there was a clinical manual that contained, among other things, a reference for pretty much every lab value there is. It’s called the Harriet Lane Handbook, and it’s published by that paragon of medical knowledge, Johns Hopkins University.
One of the reference lab values was: Serum Porcelain Level. The book actually quoted “normal” values for “Serum Porcelain Level.”
People do not have porcelain in their blood. What did that mean? It was code for “full of shit.” In fact, that in itself was a known and accepted acronym: FOS.
Another one, usable in front of patients because no lay person would know what it meant, was “supratentorial.” Without getting too technical, it means “all in their head.” Nice, huh?
All of this is leading up to my present dilemma. I have an appointment with a spine specialist to discuss, well, my spine. I have arthritis that affects most of my joints, but the one that gives me the most trouble is my spine. It started in 1987, and has waxed and waned ever since. I had emergency surgery to remove a smashed disk in my neck in 1987, and spent 1989 in a molded plastic brace that went from my armpits to my groin. I had to be in it 23 3/4 hours a day, allowing me 15 minutes to shower. Nice. But not in the least “supratentorial.”
The last two doctors I’ve been to have demanded, without even shaking hands, to know if I was a drug-seeker, despite my very “real” medical history. I never take narcotics unless I’m truly desperate: they make me sick.
So I’m nervous about this upcoming appointment. I’m wondering whether I should disclose my Bipolar Disorder. I’m wondering whether I should even put my psych meds on the med list they’ve sent me to fill out before the appointment.
How relevant is my psychiatric condition, and its accompanying mini-pharmacy, to my Degenerative Joint Disease? How would it be if I just left that part out?
The fact that I’m even thinking this makes me sick. The fact that the stigma in the minds of doctors would make me even consider hiding my condition, a whole part of my life, makes me want to puke.
Bipolar Disorder is a very big part of who I am. Yes, there are very big downsides to it, and anyone who’s read my “About” page, or my post “The End of The End” will know how much I have lost as a result of Bipolar Illness.
On the other hand, the sparkling creativity, the crackling fire that makes me who I am, could not have come about without my Bipolar. It’s a knife’s edge, and sometimes it makes me sharp, and sometimes I fall and cut myself badly. But I would not be me without the Dis-Ease.
I’m leaning toward leaving this part of my life out of the Orthopedic Equation.
What do you think?
© Laura P. Schulman, M.D., M.A. and A Canvas Of The Minds 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Laura P. Schulman, M.D., M.A. and A Canvas Of The Minds with appropriate and specific direction to the original content.