If you're married to someone in medicine, you're never sick. Nothing is ever wrong. Me: "Man my throat hurts." My husband: "Well, the clinic will just do a quick strep and they're usually negative. So unless you have it for a really long time or have a screaming high fever, they can't do anything for it, anyway." Me: "My side hurts so bad." Husband: "Your appendix is gone and so are your reproductive parts. Stomach pains are common and hard to diagnose. They won't do anything for it." Me: "Man I've been coughing for weeks." Husband: "It's bronchitis. It's viral. They won't give you anything. No reason to go in."
You get the picture.
On the rare occasion something more serious pops up, protocol in our house is as follows: Level One: Ignore health problems until they're really bothersome. 1) I have a special needs kid, 2) I'm a caregiver, 3) If I was up washing urine-soaked sheets three times during the night and scrubbing stool off the wall and floor, I tend to ignore my personal health issues. Level Two: Ask Husband what he thinks diagnosis is. (It pains me to admit, on the occasions I want to prove him wrong and I go to the doctor anyway, he's 99% correct. He should've been a diagnostician of some sort.) Level Three: Husband asks someone at work what their opinion is of said situation.
So, if you're married to someone in medicine, frivolous doctoring just doesn't happen. Secondly, if you have a special needs kid, frivolous doctoring doesn't happen. We all know that going to the clinic is just an invitation to a swimming pool of germs. As much as possible, we avoid exposing Mas to any extra germs. (I still open doors with my sleeve over my hand or with my elbows.) Thirdly, the more you find out about about illnesses and treatments the less you go in.
So, it was after a lot of ignoring and googling and questioning that I found myself lying on a table a few months back, waiting for a radiologist to enter the room and perform a biopsy. The ultrasound tech had already done her part, and I was prepped and ready. When the radiologist breezed in, I immediately had good thoughts. He looked like Joel Fleischmann from Northern Exposure. Good sign. And, he was a 1/4 doc. Had to be good.
I categorize docs by where they are in their career.
A 1/4 doc is through school and just stepping out into their career. They're hungry. They won't get every diagnostic dart on the board but they'll throw more darts. They're broke and most of them are paying off mountains of debt so they try harder. They're closer to new breakthroughs and still remember their lectures/classes; they paid attention because they were tested on those things. They haven't seen a good sampling of all the diseases and disorders yet, so they're always looking and listening closely, hoping to find them to check them off their life list. When they make their diagnostic guesses, we question them because they deliver their guesses tenatively. That is a drawback.
A 3/4 doc is past the exciting part of their career and not ready for retirement. They no longer have a desire or interest in learning; they know it all. They don't go to conferences to learn; they go to golf and cheat on their wives. They are no longer interested in patients-they only see dollar signs. At this point in their careers, they are either contributing heavily to a mutual fund or paying for a lake home or two. They have taken their Dale Carnegie courses and are good at schmoozing. (How do you think they learned how to bang their nurses and techs?) When they make their diagnostic guesses, we don't question them because they deliver their guesses in an envelope of arrogance. That is to our detriment.
A 2/4 doc can go either way. I've seen good and bad examples. They're in the middle of their career. They're either somewhere they like and they're dabbling in learning a bit more all the time or they're feeling stuck somewhere and therefore feeling resentful and not learning anymore. They diagnose the easy stuff and push off the difficult cases to the 1/4 docs; quick to insult when the 1/4 docs miss the dartboard. Or, they occasionally find the nut and diagnose the weird case and pat themselves on the back for it. The good 2/4 docs are hardest to find.
Now, over the years, we've seen more than our fair share of doctors. Mas remains undiagnosed, 19 years on, so we've seen quite an array of specialists. We've seen primary care docs, PA's, NP's, Developmental Pediatricians, Pediatric Endocrinologists, Neurologists, Pediatric Neurologists, Opthamalogists, Pediatric Opthamalogists, Orthopedic Surgeons, General Surgeons, Geneticists, Physical Therapists, Occupational Therapists, Cardiologists, Pediatric Cardiologists, ENT's, Pediatric ENT's, Neurogenetic Teams, Craniofacial Teams, Dentists, Pediatric Dentists, Orthodontists, Gastroenterologists, Pediatric Gastroenterologists, etc. The list is long. And we've seen it all. We've been to appointments where we've entered the room and the doctor did not even greet us; sat in silence for 45 minutes...complete silence...and just watched Mason. We've sat through hour long appointments where the specialist spoke to us the entire time and stared at the wall. We've been to appointments where they've called him by the wrong name, talked about diagnoses he didn't have, wanted to test for things that have already been ruled out. We've been to team appointments that have lasted an entire day. More than once. We've seen some shit.
But a pretty common thread amongst all these docs? Is where they are in their career.
I tend to like the 1/4 docs and the 4/4 docs. You can have the 2/4 and 3/4 docs. The 1/4 docs are hungry, anxious, earnest, eager to please. They're not always right, but they're always trying. They don't have all the answers, but they'll keep looking. The 4/4 docs are hard to find. But they have been through battlefields. They listen, they're intelligent, they're wise. They can level a nurse with one stern look over their glasses. They can cut through red tape like a warm knife through butter. Love me a 4/4 doc. But good luck finding one.
So imagine my surprise when my Joel Fleishmann breezed into the room...a 1/4 doc...but with the demeanor of a 3/4 doc. He introduced himself and started giving me a primer on the lymph system...arrogance dripping from every word. He wasn't just speaking down to me, he was literally speaking down to me. Then started telling me I shouldn't be there. Then told me there was no reason for me to be there. Told me he didn't consider my lymph nodes to even be enlarged, by his standards. Then he told me the test would be too close to my jugular vein and he didn't know why I would want a test done so close to my jugular vein. Then said after all the things he taught me about the lymph system, and knowing all the things he's told me about his beliefs, what would I choose to do? Would I still choose to do the test?
As I sat there, lying on the table, prepped and ready for the test, words were gone. I started to speak, but nothing came out. I ran my tongue over my teeth, feeling my crown where the spiky tooth indent was, and wondered how to proceed. Various thoughts ran rampant. He is no Joel Fleischmann. He is no 1/4 doc! What the hell?! Wonder what the ultrasound tech is thinking right now. Will insurance still charge for this? My doctor ordered this test; I didn't ask for it!
In the end, I decided anyone with that much ego did not need to be inserting a needle that close to my jugular.
But, I realized to to your doctor, you will always be three things:
He read my chart far enough that morning to see my: age, weight, and profession. 47, overweight, (I've lost a lot of weight, but still overweight by his standards, I'm sure...) and a stay-at-home mom. That's all he saw. All he read. (By the way, "Joel" didn't read any of my medical history...which was discovered during my cross examination later!! He made a decision on whether or not to carry out this test based on nothing other than a cursory ultrasound; no reading of my chart and no reading of my history whatsoever. But I digress....)
I should insert here how little I care about ego when it comes to doctors...if they're good. If a doc deserves to be an egotist, be one. But earn it. I have no problem with ego. If it's deserved. Arrogance is another matter.
Doctors don't care a stitch about your IQ, your life experiences, your real world situation, whether you're a really nice person, whether you're caring for your dad who is in end-stage Alzheimer's or your aunt with Stage IV cancer or whether you've rescued 39 dogs...you will always be 3 things: age. weight. profession.
He had no idea that I knew about the lymph system. Or that I had a special needs son at home, and had for 19 years. Or that I had a CRNA for a husband. Or that I had a daughter in pharmD school. Or that I've been reading medical journals for 19 years. Or that I used to have to look up words like "hyper" and "hypo" and now I've moved up to looking up words like "stellidate irises" and "repeat expansion disorders." Or that I know about polymicrogyria, and enlarged ventricles, and micrognathia, and retrognathia, and sub-ependymal cysts....Or that I'm not an idiot. Or that I've been a patient and parent advocate for my son for the past 19 years. Because he only saw those three things.
We are all reduced to those three things. And while it's a sweeping generalization to reduce all doctors to a fraction, it's likewise unfair to reduce all patients to three criteria. But it happens all the time. It's our job to be vocal and let them know about things #4-39....even when the doc has no interest in hearing it.
I'm usually quite good at doing that. I've been doing it for years with Mas. We had a 'surgeon' who wanted to yank his first tube out of his stomach in the office, and then replace it with his Mic-Key button. (G-tube) Well, I knew how big the apparatus was under the skin and I said, no way, that's going to hurt him. The 'surgeon' said, "He isn't aware enough to feel pain; he won't have any idea what I'm doing." That was my first foray into advocacy. That day. I demanded they do it under anesthesia and then demanded this jackhole not be involved in any way. (Of course, Howard told me he was probably not only involved, but probably the one that did it...better not to know people involved in medicine sometimes...) But, I still had my "I am advocate; hear me roar!" moment that day.
For some reason though, it's far easier to advocate for someone else than it is for yourself. And as I look back on this interaction with this doc, I'm wondering why it was so hard to find the words to let him know I wasn't an idiot. To let him know I know about the lymph system...I know about doctors...to let him know I was on to his particular brand of arrogance. But, I didn't. I sat there quietly and drove home quietly. I let him think he knew me based on #1, 2, and 3.
Don't let people base their judgement of you on 1, 2, and 3. Even busy docs. Maybe especially busy docs. We are more than the sum of the three top things about us. The three most mundane facts about us. I learned a lot that day, about self-advocacy and being able to spot 3/4 docs, but I also learned that we are all worth advocating for-all of us. Mas deserved to have a humane removal of that tube back in 1999; just as much as I deserved to be treated with respect a few months ago. Medicine and respect don't always walk together hand-in-hand, but they should. Don't be afraid to remind your medical professional of this the next time you are seen. I let him get away with being a jerk...but more importantly I let myself get away with not standing up for myself. That was harder to get over.