So I did something last night that felt pretty good. It was one of those things where you sit at the computer screen, compose a message, and then let your finger hover over the send button for minutes, perhaps hours, reading, re-reading, debating, editing, changing, second-guessing, and then… finally, you decide: What the hell…. and you send it. Well, I did that last night.

I logged into the online chart system that my doctor’s offices with UTMB uses to get appointments, cancel appointments, view test results, etc., and I cancelled my follow-up appointment with the “Dear Doctor” I wrote about in this blog post. Keeping in mind that I only have 500 characters to work with, this is what I wrote in my request to cancel that appointment:

“I have decided to seek another physician for my sleep
disorder-I noted on the paperwork I was declared
non-compliant, when I have not been. After my meeting with
Dr. J*****, I feel I was assessed blame for non-compliance
and “failure”. I came to seek help, but he did not help
improve my quality of life or address my specific concerns.
I will seek another doctor who is more interested in
addressing those concerns. Please cancel this appointment,
and thank you for your time.”

It’s not much, but it made me feel a little bit better. It helped me take back some of my power that I had willingly–although without meaning to–given to this doctor, who is nothing more than a man.

WHY SO POWERFUL?

I mean, I really want people to think about this: education-wise, doctors have the same amount of training that anyone with a PhD has in their field. Ryan has  PhD, with a double masters. He’s ‘officially’ a ‘doctor’, with a lot of schooling behind him–and because he was a college professor at one point, he had to have continuing education to keep his job, so he has as much education and training in his field as any medical doctor, perhaps more than some–and he’s super-smart, highly intelligent. Why is he not a ‘god’ to be feared and revered but a medical doctor is supposed to be? Is it because a medical doctor holds people’s lives in their hands? Well, so does an engineer or an architect, both things Ryan is trained to be… if a doctor makes a mistake on one patient, that patient might die. If an engineer or architect makes a mistake on, let’s say, a building design, hundreds or thousands of people might die.

I realize it’s not the same, and I realize it’s not as personal… hell, a bus driver takes people’s lives in his hands every day, as does a cab driver, or even an employee who prepares food at a restaurant–do it wrong, people can get very sick or die.

My point is, the reason I think we give doctors so much power over us is simply because we have to meet with them one and one, in a very personal way, in a very intimate way, and we have to, by nature of the situation, be vulnerable to them. We don’t, however, have to give away our power.

POWER VS. EMPOWERED

The absolute most empowering thing I have ever read in my long journey of health problems and seeking health solutions has come from a person who had lymphodema, and she wrote a blog that, unfortunately, I can’t find again (though I have looked and looked for it and I’m a really good searcher too). She said two things that made me completely and radically change how I look about going to a doctor.

The first thing she said was, “Fat isn’t supposed to hurt.”

The second thing she said was, “You should find a doctor who makes you FEEL better, not a doctor who just makes your test results look better.”

I’ll get into the second one more in depth in a minute, but I want to address the first one. At the time I found this woman’s blog, I had been rapidly gaining weight and retaining fluid and I was in a lot of pain. Every time I’d go to a doctor ABOUT MY WEIGHT GAIN, they would tell me I just needed to lose weight. Wait a minute… you see this circle I fought for two years? I’m coming to you because I recently started gaining weight and can’t get it off no matter what I do (including restricting my calories to below 600 per day and was STILL GAINING weight), and you tell me the way to take care of my gaining weight was to lose weight.

Stop a moment and think about this: I come to a doctor because I’m inexplicably gaining weight and can’t get it off, and the doctor tells me I need to lose weight to take care of the problem of gaining weight.

Well, gee, doc, why didn’t *I* think of that? It must be all that schooling you had that taught you this, right?

FAT ISN’T SUPPOSED TO HURT

The thing is,I was in a lot of pain, all over, achy, sore, muscles and deep-down bone-type pain. And I wasn’t really ‘fat’ at this point, but had started to gain weight, and was concerned about both of these things. After one doctor then a second one both told me that I needed to try to lose weight, convincing me that, even though my BMI was just barely into the overweight category at that time, that if I just lost weight, all my problems would be solved. Hell, at that time, I had perfect–and I don’t mean good, or kinda okay, but PERFECT–blood sugar, blood pressure, heart rate, lipids and all. I mean, doctors would have loved to have had test results as good as mine at the time.

One doctor told me that I was getting on up there in years (I was 33 at the time) and that all middle-aged women with a couple of kids were going to start to put on a few pounds and feel tired, that it was normal, and I just needed to take some ‘me’ time, eat better (I already ate a pretty healthy diet), lose a little weight, and sleep more, and I’d be just fine.

But then I read those words: Fat isn’t supposed to hurt.

And I realized: I had several friends who were much heavier than I was and am, and they didn’t complain about being in pain all the time. I had one friend in particular who was over 400 pounds, and though she would get winded, she played paintball with us, and was actually quite active and never complained about being in pain. I realized when I read this ‘fat isn’t supposed to hurt’ statement, it empowered me in a way I can’t explain. I’m trying to explain it, I realize, but honestly, I can’t truly tell you how much that meant to me to keep that in the back of my head. I hurt. I’m in pain. It’s not because I’ve gained weight. I’ve gained weight because I’m sick, not the other way around.

That’s the thing I needed the doctors to understand. I ‘get’ that losing weight is better for my health. I realize being overweight can exacerbate some of my conditions (like arthritis in the knees will be worse the more weight that is on the knees, the back will hurt more when it has to carry more weight, the heart has to work harder when there’s more ‘body’ to pump blood to–I get all that), but my lab results for the things that people with weight problems usually have are all normal–I don’t have diabetes, my blood sugar is near-perfect; I don’t have high cholesterol, and in fact, my lipids profile is near perfect too; I don’t have heart disease (I have congestive heart failure, but I have a very healthy heart–the heart failure is because of the damage the pulmonary embolisms did to the heart valves and the pulmonary artery, NOT because of heart disease); in fact, for normal blood panels, I am the picture of health.

So telling me that I need to lose weight and all my problems will be solved is just wrong. I was sick first, then got fat, not the other way around.

TEST RESULTS DON’T RULE

I don’t care what a lab test result says: If I tell you I’m in pain, it doesn’t matter if your lab results can’t find a reason for it. I remember an episode of Grey’s Anatomy in which a drug addict comes in and he’s got this back pain. He’d had back surgery, spinal fusion, has pain from that, but he is also drug seeking. So the intern/resident (not sure which) refuses to give him pain meds, because he’s a drug addict. The doctor, the attending in charge of the intern/resident says, “Yes, he’s drug seeking, but that doesn’t mean he’s not in pain. You still have to treat his pain.”

Where the hell is THAT doctor for me? It doesn’t matter what is causing the pain in the short term; it only matters that there IS pain, and you have to treat the pain. One of the most difficult things for me through all of this ordeal with medical stuff is that I know there is something out there that completely, totally takes my pain away, and the doctors won’t let me have it. Sure, there ARE reasons they won’t let me have it: it causes weight gain, fluid retention (and I have enough of that already), causes blood glucose problems, brittle bones, and a whole host of other things.

BUT IT TAKES MY PAIN AWAY!

And I am again reminded of an episode of a television show, this time HOUSE, that said, “Pain makes us make bad choices…” of course, he also went on to say that fear of pain was just as bad, if not worse. And it’s true. I don’t care about all those other problems that this medication causes: it makes my pain go away. THAT is why I need a doctor, to mitigate the damage I would do to myself if I tried to treat my own pain alone.

Anyway, the second thing that helps me was the statement: Find a doctor who makes you FEEL better, not one who just makes your test results look better.

This was such an eye-opening moment to me. I mean, it should seem so simple, right? But even we patients get all caught up in the test results. You see, there’s a reason why the AMA requires that all doctors have a physical relationship with the patient in order to treat them. Did you know that was a requirement? Doctors must physical meet the patient in person to be able to treat them, diagnose them, etc. If test results, lab work and blood work were all that a doctor needed to treat a patient, then there would be no requirement that the doctor see the patient in person.

The reason doctors must see the patient in person are multi-fold, but a big part of the reason is because test results aren’t the do-all, end-all and be-all of medical care. If test results were able to tell doctors everything they needed to know, there’d be no need for doctors, really. We’d just plug ourselves into machines that took blood and measurements, and diagnosed and dispensed medication. We have to see doctors because the test results DON’T tell us everything.

And what works for one patient, or even what works for a hundred thousand patients, might not work for that one outlier. And since I’ve already proven I’m an outlier in so many other ways, why would I expect medical treatment to be any different?

So I’m not letting the doctors get away with only looking at my test results. If I feel something, it doesn’t matter to me what the test says I should feel. If I say my head hurts, I don’t care if you can see a reason WHY it hurts, as long as you help me find a way to make it NOT hurt. That’s the point. That’s why I go to the doctor–to help get rid of the things that make me feel bad.

So I’ve given up the need to have a name or a reason or a diagnosis. All I care about now is a treatment. Doc, can you make me FEEL better? If you can’t improve the quality of my life, then I don’t care what your little tests tell you, you’re of no use to me.

I HIRE YOU, I CAN FIRE YOU

I hire my doctors. So do you. This is something you need to keep in mind when you visit a doctor. Think of him or her as an employee. Rate their performance like you would an employee. Their job is to keep you healthy or to get you health and make you feel better along the way. Rate your doctor on his or her ability to do that, and if they are coming up short, have a performance evaluation meeting with them. If they don’t come in line, ‘write them up’, and if they still don’t come in line, fire them.

Now, keep in mind, like any employee, doctors can quit too. They can quit their job of being your doctor if they feel you aren’t a good employer, if you don’t do your part in the team effort of keeping you healthy, if you don’t comply with certain things they consider requirements.

But you can absolutely fire them. Your decision to keep them on as your doctor should be performance-based. You have the right to find another doctor. Whether you pay via insurance or self-pay or even through government aid, it is your decision where you spend that money, whose salary you’re going to pay.

And when you look at it that way, that is very empowering. If you have a doctor who is not up to par, fire ’em.

Hire someone better.

And that’s what I did last night. I fired the doctor who had no desire to make ME FEEL better, and I will find a new doctor who is interested in looking at me, the whole patient, and improving my quality of life.

All that said, I have to go now… I have an appointment in about 45 minutes with my primary care doctor, and :: shudders :: they’ll be taking blood today… pray it all goes well and doesn’t hurt too much! Oh, how I love lab work!

Love and pokey needle not-fun medical stuff,
Michy