Monkeys in white coats are everywhere. You have probably seen many monkeys in their natural habitat – mainly in hospitals and clinics – but you might not have recognized them as such.
So what is a monkey, you ask? A monkey is a creature in a white coat that can only diagnose your illness if your labs are 10x the maximum of the reference range and you have a tumor the size of a basketball in your neck. The difficulty in recognizing a monkey is that monkeys closely resemble real doctors from a distance. It is only with careful examination up close that you will be able to truly discern when you have encountered one.
Let me give you an example from a recent encounter I had with a monkey to help highlight this point and to help you, dear reader, spot monkeys in your own medical travels. Last week, I had an appointment for a surgical consult with someone I believed to be a well-regarded doctor at a hospital near my home. Prior to the appointment, I faxed his office about 30 pages of radiology reports and lab results. I also sent him a symptom list, which included bone pain, extreme fatigue (I have been back off work now for over four months), large amounts of hair loss, and some pretty nasty digestive problems.
It became clear pretty early in the appointment that I was in the office of a monkey as this doctor displayed several hallmark signs:
#1 – Monkeys fail to read or consider as relevant any tests not conducted by another monkey.
This should not come as a surprise to you, as monkeys have difficulty reading. It also should not surprise you that monkeys are not very good at listening either, so don’t be alarmed when nothing you say about your symptoms seems to register.
#2 – Monkeys believe other monkeys are gods, including monkeys that have already misdiagnosed you.
I always suspected this was the belief of some monkeys and that this was the major reason monkeys have proven themselves to be unhelpful, as this sort of belief tends to go hand in hand with an inability to actually hear what a patient has to tell you about their own body. Never in my wildest dreams did I think I would get to hear a monkey say this out loud! [I really felt like Jane Goodall at this point and am still pondering reaching out to National Geographic.] When the monkey in question asked me if I was a patient of Dr. X and I told him that I was not, because Dr. X said I didn’t have Cushing’s when it turned out I DID have Cushing’s, he laughed and said “well, Dr. X is a god when it comes to Cushing’s.”
That’s right folks. The doctor that misdiagnosed me last year is a god. I don’t know about you, but for the last 40 odd years I have been operating under the belief that gods don’t make mistakes. And that leaves me in a difficult situation because I have just been told that the doctor that failed to diagnose me with Cushing’s last year was a god! What is the logical conclusion I should draw from this exchange? The monkey, sensing my obvious confusion, goes one step further, just to make sure I am getting the message he is so subtly trying to send me.
#3 – Monkeys will tell you they don’t believe you had the DISEASE YOU WERE DIAGNOSED WITH AND CURED OF LAST YEAR.
The monkey concludes by telling me “If Dr. X doesn’t think you had Cushing’s I doubt that you did.” He spelled this out because monkeys don’t think patients are very smart and he wanted to make sure I got the message. And boy, did I get the message! A disease I was diagnosed with by a real doctor, had surgery for at another hospital, and have since completely recovered from? I didn’t have it. The monkey can tell just by looking at me, one year later, and by looking at the notes and labs the god monkey left in his system.
Dear reader, if this happens to you it is important to remind yourself that no monkey is going to take your word or the word of real doctor over another monkey. Regardless of the evidence. Monkeys don’t listen, they don’t read, and they certainly don’t have deductive reasoning skills. So if you get this far into an encounter with a monkey, you really should listen to the little angel sitting on your shoulder that is yelling “don’t walk, honey, run.” Because monkeys aren’t going to believe anything you say if it contradicts what another monkey says, regardless of the merits of your statements.
And here is where I made a rookie mistake. I tried to reason with the monkey. I told him that (1) I went elsewhere when I didn’t get diagnosed by the god monkey; (2) the excellent doctor who I saw next ran a battery of tests and found plenty of evidence I had Cushing’s, despite what was listed in the monkey’s system by the god monkey; (3) that the excellent doctor ordered a better MRI than the god monkey did and in fact saw a tumor; (4) the neurosurgeon (also an excellent doctor) I saw after getting diagnosed removed two tumors from my pituitary; and (5) after surgery all of my Cushing’s symptoms went away. And I am NOT going to argue with a monkey about a disease I had last year. End of discussion.
My bad. I already knew #1 and #2 and should have known trying to reason with a monkey was futile. All he did was look at me and laugh. If a monkey doesn’t believe you had Cushing’s, a disease he never was even asked to evaluate you for a year ago, he certainly isn’t going to believe that the problem you came to see him about today exists either. And he will make this abundantly clear to you. If I had walked in with a bloody stump where my left arm used to be, he would obviously deny the arm was missing too because “god” never made a note of that in his system either.
#4 – Monkeys will tell you that you are “chasing a problem that doesn’t exist” but that even if you DID have the disease you are jonesing for, “he wouldn’t treat it anyway because your labs aren’t high enough.”
This really is the hallmark sign of a monkey. They can’t think for themselves and they therefore assume you can’t either. They don’t understand that you showed up in their office for perfectly logical reasons – you had symptoms and some lab results that indicated there might be a problem with the organ that they are trained to treat. All they want to see is a number on a piece of paper, preferably from another monkey. The number on the piece of paper is called a lab result. And the lab result should be very very different from the range of numbers that are generally to the right of the main number on the same piece of paper. This number allows monkeys to wear white coats and make decisions about the medical treatment of patients just like real doctors do. And this number tells them whether something is wrong with you. They can’t really read or listen and this little piece of paper allows them to neatly bypass that whole complicated mess. If you can’t get out of bed most days without crying from pain, if you can’t make it through the day without sleeping, if your hair is falling out in patches the size of a quarter, and if you haven’t had a bowel movement that even remotely resembles normal shit in the past five months, it doesn’t matter! Monkeys don’t need to trouble themselves with such trifling details! If the lab says the top of the reference range is 10.2 and all that is in “god’s” system is 10.1 (despite the stack of labs you are holding in your hand that didn’t come from god), you are SOL dear reader. Not only were you not sick last year, you aren’t sick today! Congratulations, patient. Please go home now and go on with your life and stop chasing a diagnosis for a disease you don’t have.
And so, dear reader, once you realize you are in the office of a monkey, what should you do? The best thing you can do is just gather up your belongings and leave. You don’t even need to say why. You don’t need to say thank you and have a good day. And even if you want to, don’t bother telling him you hope he gets an awful disease with borderline abnormal labs and that it takes him a decade to figure it out. Just go.
I know all too well this is easier said than done. It isn’t easy because you are not a monkey. You are a human and you are sick and it hurts to be dismissed, especially when you are truly suffering and just want to get better. And it sucks because often the one thing standing between you and getting better is a damn monkey. So, let me leave you with a few thoughts that helped me when I was trying to get diagnosed with Cushing’s and that I hope will help you too.
Tip #1: If you have been sick for several months and you have seen several doctors but are not getting anywhere, there is a good chance you have been seeing monkeys. You are not looking for a monkey. You are looking for a thinking, listening, caring doctor who is willing to figure out what is wrong with you after all the monkeys have failed.
Tip #2: Doctors are not gods. Even good doctors are human and even though they listen and they think outside reference ranges and really try to figure things out, they will sometimes make mistakes because they are human. But monkeys don’t think they are human. They think they are gods and that they don’t need to listen or think outside reference ranges or read. And because they don’t listen or think or read, they make more mistakes and they often make worse mistakes.
Tip #3: If at first you see a monkey, get a second opinion. If you see a monkey on the second try, get a third opinion. To limit the number of monkeys you see, talk to other patients that are having the same problems as you. If they managed to see a good doctor, try and see their doctor.
Why is it good to listen to other patients? Because patients aren’t monkeys. They have been in your shoes and have already done a lot of the hard work for you. I learned this when I had Cushing’s. After seeing a large number of monkeys, it was other patients that finally sent me to a really good doctor. And he listened to me and did tests and took all the evidence into account when trying to get me better. And he succeeded.
And so I did the same thing now. After my encounter with the monkey, I asked other patients with the same problems I am having now who I should go see. They recommended two doctors. I will call them Dr. L and Dr. N for short. Both doctors read my file in it’s entirety. Both doctors listened to my description of my symptoms and asked questions. Both doctors agreed my calcium was “borderline” but that my other labs were not normal at all and might be consistent with another tumor. They also acknowledged that really sick patients sometimes have “borderline” labs because reference ranges for labs don’t fit every patient. Instead of dismissing me because I am not an “easy” case, they both independently decided to keep digging. One doctor is sending me for imaging; the other is sending me for more labs.
I am scared to death that after more tests and more imaging I will still come back empty handed and a little tiny monkey in a white coat will be sitting on my other shoulder saying “I told you nothing is wrong with you.” But I know something is wrong with me. And I know I will figure it out someday, with the help of some good doctors, some very smart patients, and hopefully no more encounters with monkeys.