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November 18, 2007

Chronic Disease and Doctor Phobia

Despite the grand title for this post, I've done no research and have not even anecdotal evidence to support my assertion that chronic disease will give you doctor phobia.

No, not everybody. But seriously, think about it. The reason that most people aren't afraid of doctors or don't hate them might be that most people, most of the time, for most of their lives, are fairly healthy. Or, if they're not, their poor health is a result of lifestyle, and manifests in frequent bouts with colds and flus and things of that sort, i.e. not doctor-ready disease. So most people just plain don't see doctors very often, very long, or very intensively.

People with chronic disease associate doctors with bad things: the time you got so sick you almost died and went to the doc/hospital and they told you you had a disease which would constantly threaten, and in the long run shorten, and on a daily basis completely alter your life. And thereafter, going to an office to get frequent updates of bad news.

And this is the best case scenario. I mean, this is what happens when you have good doctors. When you have bad doctors, you can add to the above:

  1. The time/s something really bad happened that didn't seem to have anything to do with your disease and your doctor blew it off and you ended up in the hospital, and it was a fellow chronic disease patient who explained to you what was wrong.

  2. The time something really bad happened that DID have to do with your disease, and you ran around the doc's office/laboratory/hospital, freaking out and telling everyone what was happening to you and what you needed and nobody would listen to you or give it to you until you'd had a meltdown/seizure/fainting fit.

  3. The time you were in shock, a condition which is a common side effect of your treatment, and your doctor let you walk out of his office into traffic because he didn't like how you were behaving.

  4. The time/s your doctor didn't know something that you did know, but wouldn't admit it and made you feel like an idiot, even though you KNEW you were right and an article came out years later that proved you right.

  5. The times you went to your disease doctor for common problems and s/he told you s/he wasn't a primary care physician, so you asked for a referral and they wouldn't give you one, then you picked one out of the phone book and they were so clueless about how your chronic disease behaved with common problems that you (see a theme developing here?) ended up in the hospital.

  6. The time/s you started with a new doc and during the intake interview the doc came up against the fact that your symptoms are atypical, so s/he just plain wrote down what s/he expected your symptoms to be, rather than what you had just told them they were, and you only found out later when you got the ten-page DMV form back from them that they had to fill out for you to get your drivers license, that they had sold you out to the DMV for the typical, and more dangerous, symptoms that you didn't have.

Yes, all of these have happened to me.

And, on top of all of this, I had the ultimate bad experience: during a common, out-patient surgery in 1999, my anesthesia began to wear off halfway through the surgery, and during the last fifteen minutes I felt what was going on. (It was eye surgery.) It hurt, but the anesthesia hadn't worn off entirely, so it was really more about fear and loss of control than anything else.

After that I didn't go back to that opthamologist for three years. Sure, I made appointments, but then, when the day for the appointment came, I'd just ... forget. Then I'd remember when it was too late and make another appointment and then ... forget. Again and again. For three years. Finally, it occurred to me that I didn't actually have to go back to that doctor and I found a new one. Two years later, I finally got my butt into a seat in his office.

From there things went to worse. I was absolutely awful to the staff in his office. Of course, they put me through an obstacle course which was worse than usual: a clipboard for my info, a nurse to take more info, a tech to do the tests, an underling doc to do an initial examination ... all of this before I got to see the real doc. The underling doc asked me some questions which made it clear that he wasn't too familiar with diabetes ... and I told him so. By the time the real doc came, I was persona non grata. Even after I burst into tears and commenced to sob in his office for half an hour, it didn't seem to occur to anyone to ask if I was alright. All that mattered was how I was treating them, how they felt about me.

I finally explained what had happened to the doc and he got a lot nicer ... but not before he had defended the bad doc to me. What an asshole. Yeah, both of them.

Now understand: I realized that I was avoiding the eye doc, but I didn't actually feel any fear per se. I didn't feel anything, not even the desire to avoid the doc. It was all happening under the surface, and manifesting in a very simple inability to remember my doctor's appointments. After my crying jag at the eye doc's, I realized that I had been hiding a leetle bit of trauma, but I still didn't realize that I might be doctor phobic until this past week.

See, I'm trying to get in to see a new doc, who works together with a primary care doc (my current doc doesn't do that, but it's important for chronic patients whose common flus and infections are complicated by the chronic disease). I made an appointment, forgot it, made another one, and forgot that, too.

It was weird. The second appointment, I put it into three different calendars and reminded myself mentally of the appointment three or four times a day for a week. Then, the day of the appointment, I forgot about it from nine in the morning until 5 in the evening--exactly as long as needed to prevent me from doing anything about it.

It was bizarre being able to observe my own neurosis in operation. So obvious! So unsubtle! So effective! I decided to nip it in the full-blown bloom and went straight into the doc's office the next day, without an appointment, and asked to be allowed to introduce myself to the doc, just for a sec. He seems like a nice young man, the first doc I've had who was very obviously younger than I. Let's hope that does the trick.

People who know me consider me independent in the extreme, and it's true, I insist on my independence. But what no one realizes is that my life is lived in a state of the most abject dependence: on doctors. The pharmaceutical products that literally keep me alive--insulin and thyroid--aren't available over the counter, why exactly, I don't know. I can't get a lifelong prescription for them. I can get, at most, a year's prescription for the stuff I've been using for twenty-six years. I need a doctor to get them for me.

I can't even order tests for myself. I'm supposed to get a certain set of tests done quarterly, my entire life, but I can't order them myself, or read them myself. A doctor has to order them for me and gets them sent directly to her/him. I can't even go and look at my medical files at will. I have to request them and go through red tape.

My health, my quality of life, even my mobility (like my ability to get a driver's license) hang by a doctor's whim, mood, ability to understand, or free time to keep up with their medical journals. No healthy adult has a life so affected by another adult's quality of mind--not even an employee of a bad boss. It's impossible to understand what this is like if you are not a chronic patient yourself.

The "good" diabetics I know (of), the ones with good control, manage a sort of doublethink that I can't maintain: while they educate themselves thoroughly and relentlessly, they also maintain a plausibly deniable subservient relationship to their doctors. If you read their blogs or listen in on their boards, they never make a move without checking with their docs first. They'll even use language that fits more with a parent/child relationship or a military hierarchy: getting "the go-ahead" and such like. Permission granting.

I'm not sure this isn't the healthiest way to deal with doctors who are trained to unconsciously despise patients, and to consider themselves--and not the patients--the hero of the story. Until our medical system evolves further and doctors get less adulation from patients kept ignorant by the appalling state of our pubic science and health education, and more understanding from well-informed, empowered clients (which is what we are), to stay healthy you probably do have to behave like a good child.

Which means I'm fucked.

By the way, this is all by way of saying that I won't be getting the pump in November. My next attempt at an appointment with the doc isn't until early December.

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