"THAT definitely isn't normal. This is NOT a bruise. No. Whoa. Wow." The not-so-skeptical-now hematologist went on as he sheepishly looked wide-eyed and geeked out at the gallery of photos on my cell phone. He was looking at some sort of freakish thing that happened to my hand when I had bumped it a few weeks earlier.
This was my follow-up appointment with Dr. Skeptic and lo, my blood work was normal. After giving me this news, I spent the better part of the short 1-2 minutes of rebuttal he'd given me, to try and explain yet again, that this wasn't a normal hematoma. He didn't realize that I wouldn't have gone to my PCP's office for a normal hematoma. That woman made me feel as though she was the principal and I was the kid who shot a spitball at the teacher and lied about my guilt.
No Dr. Skeptic, I went to her because my husband and my mother begged me to go. They were far more freaked out than I was. First however, I went to an express medical facility. Surely they were used to nuts and I could avoid the shame of seeing my PCP for a bruise. The doctor there was at a loss and told me that I needed to see my PCP.
Further Dr. Skeptic, my condescending PCP sent me to you because even she saw something. "Mmmm hmmmm." Wouldn't you rather be slapped than hear that? I would. He left the exam room to do something, telling me he'd be right back. As soon as he was out of sight, I began searching my phone for the pictures of the weird injury I had sustained.
For over a year I had been getting minor injuries that would swell. I mean really swell. The swelling would "move." Sort of migrate around the injury. They would be mildly black and blue, but mostly huge. The huge-ness didn't come right away either. Sometimes hours later. The things would swell like an allergic reaction to a bee sting, then go down for a couple of minutes and come back. Sometimes they'd go down for a day and come back. They hurt as well. Honestly, had I truly been the whack job some of these doctors made me out to be, I would have been thinking aliens... or something.
The now excited doctor went on as he saw my not so thrilled as he was face, "Hey, yeah... I'm sorry about that. You know what they say 'A picture's worth a thousand words.'" He told me that this was not a hematoma at all, but some sort of "weird allergic reaction to injury." He didn't know who to send me to, an allergist or a rheumatologist. I told him I didn't feel like going to either. I wasn't going to die. Let's let it be. "Well, that's just it, you don't know if you'll die. You don't know what this is. What if this is what happens to you when you get surgery and it's why you bleed so much?"
Dr. Skeptic was now Dr. Compassionate. He was practically begging me to promise him I'd see someone about this. He gave me names, numbers and prescriptions to see these doctors. Even offered to call and make the appointments for me. All because of a picture. Before that picture I was Annoying Andrea. I didn't follow up with any specialists, and the photos were lost with a cell phone transfer. No pics, no believe Andrea.
I don't know what it is today, but doctors (especially the young ones, or older fried ones) tend to not believe anything a patient says unless they see the proof. Whether we're talking about lab testing, symptoms, or even the size of your family and breadth of what your illness has cost them.
I have an awesome cousin who's a physician's assistant and has also had her own share of illnesses in the family to deal with. She had been watching me go through, not only debilitating symptoms but a quite shocking and rapid physical appearance morphing. She suggested taking "before" photos to my doctor's appointments. Whatever, I'd try.
At my next E.R. visit and consequent hospital stay, I had a nice young internal medicine doctor and his army of interns come in my room to examine me. "Crap. He's going to show off for them. Here we go." "So Mrs. Phillips" the act of concern was so overplayed, he could've given Lawrence Olivier a run for his money in a death scene. "Please, tell me what's going on."
I was hanging out on 4 liters of oxygen and no one had any idea why I needed it, but if they took it off, I was back down in the low 60% range. I had all sorts of things going on, none of which I had any clue as to why. In fact, I was there primarily because I was afraid of adrenal crisis and so were the E.R. doctors.
When I began explaining, the good doctor let me get out all of two sentences before he interrupted with "So you're fatigued." Alright, them's fightin' words. I got up off of my bed (I have to admit, I still relish in the frightened and surprised look on his face) and in a voice that would typically be termed an "outside voice" I said, "Fatigued? I have five children…” and went from there into my very exhausting history, of before and during my being ill and up until my seeing him. I ended it with, “Exhausted? No. I know freaking exhausted." With that I handed him my "before" photos, for which I consequently dubbed "The Platinum Card." Taken only 6 months prior, with all of my kids and my dear husband who was now sitting next to me with the same sort of expression the doctor had... only my husband was afraid for the doctor.
Wow! The young handsome doctor was tearing up! He looked up at me enraged. At this point I wasn't sure if he was ticked at me and was the kind of guy who cried right before he pulled an Uzi out from underneath his lab coat, or if the photos had done something to prick his conscience. I flinched not. "Well! We don't know what's going on with you Mrs. Phillips, but it's high time SOMEONE found out!! I'm going to make that happen!" Bless his handsome heart, he did.
I saw him later during my stay (he came to check on me frequently) and he apologized again for suggesting I was only exhausted. "Can you blame me though? Do you know how many people we have that come in here for hang nails and think their world is ending?" I told him that I didn't blame him for his skepticism, but I did blame him for his not listening. Why did it take those photos to convince him of everything I had said? Further, why didn’t the oxygen cannula stuck up my nose, say something at least curious to him?
I have all too many stories like this, and unfortunately, there are countless stories like this from many others. It’s apparently all the rage now amongst medical professionals, in the western world… oblivion that is. The labs show no inflammation, so clearly the visible to the naked eye, inflamed joints are just...fat? The bone scan showed broken ribs, along with a cracked sternum. The PCP didn't get that scan so, "Um, I'll need to see that scan." Never did get those results, so according to her, it never happened.
What did medical professionals and scientists do before photography, x-rays, labs and ultrasound? A woman comes into the town physician's office in labor "I'm sorry Mrs. Johnson. Yes, I know Jedidiah brought by the chickens to pay, but I still haven't seen the dead rabbit. I just don't believe you're with child." Bewildered, Mrs. Johnson waddles away as she writhes in labor pain to look for an unsuspecting bunny.
What's most puzzling is that so many of these tests are unreliable. I have Sjogren's Syndrome, one of the more common autoimmune diseases. I'm seronegative, as are 30% of all Sjogren’s patients. This means that our Sjogren's blood markers are all negative. I have every textbook symptom of Sjogren’s, yet it took 4 years and 5 rheumatologists before I was finally diagnosed with it.
Go to a Sjogren’s message board, if nothing else for dark entertainment. You will read stories that sound unbelievable, but I know they’re true because I lived through them. You have men and women who will be twitching, convulsing, falling over, feel nothing when pins are jammed into their legs, right in front of their neurologists. These neurologists will insist that these patients have nothing neurological going on because the tests are negative. I know of quite a few that have positive testing, all the symptoms, but it’s not enough to convince their doctor. There’s something specific they’ve not yet seen.
Go to get a second opinion? Their reaction is akin to a superstar hairstylist having a client "cheat" on them. Actually, I’ve had some who were much less professional. They won’t look at me, much less listen. Blind with jealously and deaf to the details of my adulterous relationship.
I’ve been blessed over the past year with acquiring a dream team of doctors. I’m afraid of losing them. I’m sickened to think about the many, many people I know of and do not know of, that are still seeing doctors who have tunnel vision. What’s to be done? Doctors should be trained to listen to patients with humility. They can begin doing this by being trained under learned, humble and well respected doctors who know the arts of both sympathy and active listening. A good proverb says “Wisdom is supreme—so get wisdom. And whatever else you get, get understanding.” All of us, patients and doctors alike, could use meditating on that proverb.