Unmet needs: why we're afraid to talk to our doctors

 

This is a Facebook comment that I want to turn into a blog post, because these are important issues, and I assume I am hardly the only one who is struggling. It's an unpopular view about which hardly anyone speaks, and I think this is due to guilt, shame and being intimidated by the labyrinthine nature of the medical system right now. It causes more stress than it solves, so I try to avoid it as much as I can, and avoiding medical issues and hoping they will go away is NOT a good strategy over the long haul - and I don't even think we're at the midpoint yet. I normally use a lot of images to break up text, but this is going down as is. 

I have one of those phoned-in "doctor's appointments" scheduled in a few minutes and am waiting by the phone with my stomach in knots, though I was told the call could come any time between 8:00 am and 5:00 pm. 

I am dreading it. After six months, I have so many unaddressed issues built up that I don't trust myself NOT to spill them, become angry and alienate the only source of help I have right now. She has a history of discounting and countering virtually everything I say. Medication is also a huge problem, and based on past experience I fear she will withhold some things in a way that "shouldn't bother me" because it didn't bother anyone else she has treated. 

I am being told, not WHAT to feel, but the only way TO feel, because, surprise surprise, there's a pandemic on and we're made to feel very guilty and even shamed for having medical needs that have gone unmet for half a year (and most of this stuff has been going on for 2 years or so while I have actively searched for a better doctor). 

In my case, it's psychiatric, so I virtually don't have a leg to stand on, and based on 50 years of dismal experience, this almost cannot go well. Everyone has their own bag of bricks to lug around, and each one is different, but I have been trying very hard to convince myself that this stuff isn't important, and I should just be a big girl and suck it up. That is the impression I get, anyway. 

I try to keep negative medical things off my Facebook page because it is NOT a popular view to criticize doctors, who have been lifted up to the status of selfless heroes when many of them are just not doing their regular jobs and are leaving people (not just me) with no safety net, which is considered some kind of indulgence, I think. My main hope is that she will have an anonymous intern handle it, which she has frequently done over the past two years. My encounters with her, though rare, are incredibly stressful and leave me feeling drained and discounted. And I can't "just get another doctor", so that door is closed to me. 

Wish me luck, please.

Horrific medical practices: even worse than now!

I guarantee you will find this photo gallery both horrific and fascinating. Most shocking are the attitudes behind each practice: a woman with an artifical leg hides her face in shame. Mental patients are wrapped mummylike in wet sheets and laid out in corpselike rows. "Female remedies" (for what??) imply that femaleness itself is a disease.

Come along if you dare.


http://www.ebaumsworld.com/pictures/view/83858344/

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DON'T listen to your body!

As is so often the case, this post is something I adapted from my personal journal, which I will admit often amounts to a load of complaining. But keeping a journal is one of the sure symptoms of writerhood. I have had many a person sit down with me over the years saying "I want to be a writer", meaning they want to make effortless money and be an instant best-seller (it can't be that hard, can it?). One of the first things I ask them is, "Do you keep a journal?" Normally I get a blank look, a why-would-I-want-to-do-that expression, as if a journal must be written on pink Hello Kitty stationery with scented lavender ink.

Mostly people merely take stabs at writing, brief ones. Then they sort of run in terror, realizing that they will actually have to put their work "out there". As a friend recently told me about her own former ambition to write, it just got buried under the mundane tasks we all must undertake in the course of a day.

All this leads to something else. (Which is what I seem to do in this blog, though I can't tell you why. Steinbeck leads to Travels with Charley leads to why people treat dogs like babies.) So this is about my never-ending, awful sort-of-relationship with doctors, who have been poking and prodding my sagging old body for a year now trying to figure out why I am having this persistent, nagging, sometimes severely disabling pain.

It's getting in the way of jumping in to preparing my novel The Glass Character for publication (which I wish I could enjoy more). This is what I wrote this morning:

"I want to get the medical stuff over with, which it should be next week when I get told there’s nothing wrong with me again. I have a theory it’s a low-grade infection, but I doubt if he will give me anything for it, will likely say “it’ll go away on its own” when I have been in pain for nearly a year now. They said the same thing about the infuriating ear symptoms which I’ve now had for 13 months. Things do NOT “go away on their own” in many cases, but doctors now let things fester for so long they become ingrained and chronic and really WON’T go away. We then have a "nuisance patient", a hypochondriac completely obsessed with imaginary illness. But someone has commanded doctors from “on high” not to prescribe antibiotics. They’ve swung from one ridiculous extreme to the other, and in both cases it’s to get you out of the office FAST."

So how many specialists or procedures HAVE I been exposed to? Let me count the ways. Gastroenterologist (God, these things are hard to spell). Gynecologist. Ultrasound. Colonoscopy. Ultrasound again, because they couldn't find anything the first time, and now urologist/cystoscopy (can’t ever remember how to spell that one). I have also been to a nephrologists and an otolaryng-whatever-it-is. All uselessly. Each person takes a part of the body, and they are never co-ordinated or put together in any way. They’re not supposed to be. Each body part must get sick in its own way, and if it gets sick outside of certain strict boundaries, then you’re not sick, or at least that part of you isn’t. If you have a condition such as a bladder infection and only have three symptoms out of five, then you don’t have a bladder infection and will not be given antibiotics.

Oh, antibiotics! Like Valium in the '70s, doctors handed them out like candy until relatively recently. Patients wanted something to relieve their fear and distress about being sick. They wanted to come away with something. Doctors wanted them the fuck out of their office so they could go on to the next patient. So they went home with a prescription.

Then all of a sudden, we are being told WE were wrong to accept all those prescriptions for all these years. WE were wrong to seek a fast and easy way out of disabling symptoms. We should have just put up or shut up, because there was probably nothing wrong with us anyway.

Suddenly, in spite of everything our doctors had been telling us for decades, antibiotics were just wrong.

It still comes at us from every side, ads on TV with cute but shaming slogans like, "Not all bugs need drugs." It's a kind of finger-shaking admonishment to the public, because for God's sake didn't we create this situation to begin with? The public, being weak and self-indulgent, demanded antibiotics so vociferously that they created a race of Superbugs which are now resistant to medication.

We have rendered antibiotics almost completely ineffective. How does that make us feel?

Doctors had to stop acting like free vending machines for this seductive candy because "someone" ordered them to, some medical association or other. "It will go away on its own" became the new mantra. This got patients out of the office nearly as fast as "Here, take this prescription for amoxycillin".

Now, you can have pus running out of you and feverish red inflammation and strep throat (and my granddaughter, then three years old and running a fever of 104, might have died from it: my daughter, a dragon when she needs to be, INSISTED she be prescribed antibiotics, which cleared it up completely in two days), and the doctor will not prescribe antibiotics. Once again, the crushing weight of shame is applied to us as she tells us something we have already been told 100 times. "Patients ruined antibiotics by taking them too often. It will go away on its own."

There are two things my doctor never prescribes: antibiotics and pain relievers. When I told her I'd had significant and even severe pain for a year, pain that sometimes prevented me from functioning well, she said, "Advil is the drug of choice."

"But I've been taking Advil for a year now and it has no effect at all."

"Try Tylenol."

"I've tried them all. None of them work."

"Advil," she said, a little testily.

"Can't I have anything stronger?"

Oh, it's the facial expressions, the bodily shifting, the "I know I'm dealing with an addict cadging drugs" manner that gives it all away.

"Advil is the drug of choice." (Meaning: if Advil doesn't work, I am having the wrong kind of pain and need to set it straight. Or else I'm lying.)

Another time she asked me the doseage I was taking and I said something like 800 milligrams. "That's too much," she said. "But the lower dose doesn't do anything." "Always take the correct doseage or you'll damage your kidneys." But the "correct doseage" wasn't doing any more than the so-called overdose anyway.

I have enjoyed good health for most of my life and have stayed away from doctors whenever possible, so I can hardly be called a hypochondriac unless such a damning stereotype can develop in a  few months. I hate taking pills, and it does not occur to me to abuse prescriptions. I have dreaded developing some sort of vague but persistent, painful medical condition that no one can get to the root of. And now it's here. My own theory - and who gives a shit what I think anyway, it's only my body - is that this is a low-grade bladder infection which has been flying under the radar for a year. But doctors refuse to see it that way. "Your urine test is normal," my doctor said, furrowing her brow and sitting back in that "get out of here and go directly to the psych ward" way. If my urine test is normal, I cannot have a bladder infection and have to go home and behave myself.

Over and over again I hear/read the same advice from people: Listen to your body! If anything feels amiss, go see your doctor immediately! I am here to tell you that you won't be in her office for long. Your symptoms will have to escalate until you are in severe enough pain to wait months to see a specialist, who will tell you there's nothing wrong anyway. The cancer diagnosis won't come until it is far too late to treat it. Then you will be asked, "For God's sake, why didn't you DO something about it?"

Is there nothing you can do? Why are you stupid enough to ask? Take Advil, which should get rid of all your symptoms. It's the drug of choice.

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The waiting list for the waiting list (or: I have a drug for that)

I don’t remember where I heard this – maybe in Moscow on the Hudson, one of Robin Williams’ earlier films, where he had not yet calcified into the parody of himself he is now. But it was a reference to being “in the lineup to wait for the lineup”. Do we think this only applies to the fucked-up Soviet system of inefficient callousness?

Substitute “medical” for “Soviet”, and you’re almost there.

I’ve been waiting to hear back from my doctor. I went in three weeks ago to address some alarming symptoms, the kind of thing that medical articles and TV doctors say you should follow up on immediately. I need a certain nasty-sounding test. It’s an up-the-ass sort of test that I don’t look forward to, a Roto-Rooter boring into my colon. I bailed on one of these tests a year or so ago, just couldn’t make it. This time there’s a serious reason for taking it, and I’m hearing nothing.

Maybe three weeks on the waiting list for the waiting list isn’t long, who knows. I have phoned twice to check up on it, and both times was hand-pattingly gotten rid of. In the nicest, we-know-who-you-are-you-hypochondriacal-old-bat way.

I didn’t think I had quite reached old-battitude yet, but I guess it’s a matter of degree. I don’t think of myself as a hypochondriac, but I once was told I was a “psycho-chondriac” because I dared to complain about clinical depression. Nowadays, they’d get down my neck if I didn’t complain. Don’t you know that’s a serious condition? Don’t you care about your health?

You don’t dare listen to medical specialists, especially not on TV where the more ludicrous the claim the better, because it “makes good television”. Soon the theory will be completely discarded, and of course anyone who goes to their doctor to have it checked out (as the medical “expert” never fails to insist that you should do) is looked at with that blank, incredulous, “what-the-fuck-are-you-talking-about-anyway” look.

And doctors also say “whatever you do, DON’T go on the internet about this.” I can see why, I really can. Lots of internet sites about health verge on black magic. Wave a dead cat over your head at midnight, and you’ll never have a heart attack again. Eat certain things, ingest herbs, roots, whatever they have for sale at an outrageous price, and your cancer will vanish and never come back.

But why can’t we get some basic information in this information age? Are the doctors, overloaded and harried and eager to install a revolving door in the office so they can yell “NEXT” every five minutes or so, any more useful for our enlightenment? Especially since they all have different philosophies and insist that theirs is the One True Religion.

I’ve noticed something else. My husband collapsed on the floor about a year and a half ago, and no one knew why. It was alarming to see him surrounded by police and ambulance attendants and paramedics. I had to stand back, way back, while they worked on my grey-looking life partner. Then came the barrage of tests. I don’t know how many tests, but he had to see many specialists, each of whom took a different part of the body and studied it.

Reminds me of that old story about the blind men and the elephant. It's a big piece of leather. No, it’s a thing like a hunk of rope. No, it’s a big chunk of ivory. No, it’s a – look out! It’s about to charge!

. . . PHHHHHHHHHHHHHHT!!

I do have a point. None of these specialists ever talk to each other or even send reports to one another. It is as if Bill had a separate heart, nervous system, brain, bladder, prostate, etc., component parts that were assembled like Lego or an old Meccano set. They weren’t parts of a person because these specialists are not concerned with a “person”. They are concerned with a piece of tissue, a hunk of organ. Never is the circulatory system connected to the heart, that’s insane! Nor is brain function tied to the nervous system. How absurd. They’re separate systems.

Frightening, is what it is. There is no consultation between experts, just conclusions, usually that everything is just fine and the patient is full of shit and whining for nothing.

Sometimes I want to bring back the days of the family doctor, like the wheezing old guy who carried a black bag into our house when I had the measles or the whooping cough. For a while after my first grandchild was born, there were three generations of my family seeing one physician. I’d had my doctor for nearly 15 years and recommended her to my daughter, who took her on, then started taking her infant daughter in to see her. It was an interesting throwback to a different time that is now completely obsolete.

Then she retired, and that was over and done. A child nowadays would have to go to a “pediatric specialist”, and if she was acting up a bit and stamping her foot and not paying much attention to parental commands, she’d be diagnosed autistic. ADD is now old-fashioned and has been pretty much phased out, like personality disorders in adults. The autism “spectrum” is the thing now, you see.  And by the way: I have a drug for that.

Oh, don’t get me going on psychiatric stuff, the way fads and fashions seem to dictate everything. Depressed women used to be given Valium, a highly addictive tranquillizer, which was about as sensible as taking a crowbar to someone with a concussion. Gay men were sick. They couldn’t help it, they were “immature” and their mothers were too dominant and their fathers were too weak. If they tried really hard, they might pass for hetero. But for the most part homosexuality was seen as a permanent mental illness, a serious one that disrupted the chance for a “normal” life.

For every action, there is an equal and opposite reaction. Simple physics. So now gay people – especially gay men in drag – prance around in pride parades, flaunting their “outness”. And we all smile, some of us a bit tightly, not daring to say we find the whole thing a bit silly, if not extreme. “Why aren’t there any heterosexual pride parades?” one unfortunate local politician once muttered, only to have so many bricks thrown at her that she never spoke again.

I’m not for going back to the barbaric model of “diagnosing” sexual orientation. But I don’t see psychiatric patients prancing around in parades celebrating the fact that they’re “out”.  They’re afraid, that’s why. Their condition is still very much medicalized, marginalized and stigmatized. There is no flexibility here, no individual definition of “normal”. You’re either a fuckup or you’re not. And if you’re not readily diagnosable, if you don’t fit any of the known (or should I say current/trendy) psychiatric categories, there will be hell to pay. You may even be told you’re untreatable and your condition is hopeless.

Do I sound a bit cynical about medicine? I wouldn’t go back to the days when no one even spoke the word cancer, or people in psychiatric distress were “put away”, often for life. (By the way, are you wondering now why I even mention psychiatric illness, when it obviously has nothing to do with “real” illness, “physical” illness that takes place in the body? Psychiatric illness takes place three feet above your head in a little white cloud with a nasty little man in it who spits on you every so often.)  I wouldn’t go back, but I couldn’t anyway, could I? There is no going back.

So I wait. If I do have cancer, which is extremely unlikely, then it is bubbling and festering away inside me even as we speak. It may be half a year before they can even tell, because I am waiting to see how long I will be waiting.

I’d like to see a horse doctor, please. If a horse has colic, they shove a big rubber hose into its rectum and blow a stream of warm water in it until the obstruction pops out. Sounds like a good idea to me.

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I hate the doctor, and I don't want to go

The title sums it all up. I hate doctors. When have they done anything good for me? Every time I go, it turns out to be "nothing".

So should I conclude that it will always be "nothing"? The "it hasn't happened up to now, so it won't happen in the future" philosophy sucks rocks because it's illogical. It simply isn't true.

I am at the age - God, I hate that word - where I maybe need to worry. This is the time people are told to have screening tests like colonoscopies (which I always call colostomies by mistake - I freaked out a friend once by telling her I was supposed to have one) which scare me half to death because I've been told they can be agonizingly painful. One health forum had a comment from someone who said she would take her chances with serious disease rather than go through that again.

My husband collapsed on the floor about a year ago, and paramedics and police rushed over. Made me wonder why everyone ignores me when I have a medical problem, but then, he's male and considerably older than me. It might be heart disease, after all (because we all know women don't have heart attacks!). In the hospital they put him through a meat grinder, doing every possible diagnostic test on him. The follow-up was even more rigorous, cardiac, neurological, urological, bowel and guts and everything else they could ream out.

The result was exactly nothing.

So I don't want to go to the doctor. I don't want to go to the doctor because I've had some symptoms lately that are probably nothing, but at the same time scare the hell out of me.

It's funny, because Bill and I have talked about how we can't afford to live as long as our parents did (all four them were well over 90). In fact, we may have trouble affording our 70s. We've joked that if we make it to 80, we'll kill each other, kind of like a duel where we both shoot at once. But what if he misses, and I don't? Will I be charged with murder, or merely self-defense?

It doesn't sound good.

I think about cancer, everyone does, or do they? I don't know, I don't interview everyone in the world, or on the street. The thing is, people with cancer are usually seen as heroes, brave souls who keep smiling no matter how much it hurts. In contrast, don't ever get a psychiatric problem or you will be more or less seen as a fuckup. No one will visit you in the hospital with flowers and balloons because it's your own freaking fault you're there. Their ancient, deeply-buried dread of demonic possession will keep them away. But cancer, now! There's a great opportunity for bravery, for heroism, for stoicism in the face of pain, and lots and lots of warm get-well wishes.

Do I sound just a little bit cynical? I have my reasons.

I don't think I have cancer. So why go? I have this niggling worry. Shouldn't I ignore it? Do I want to be called a hypochondriac? But how can you be a hypochondriac if you hate doctors and stay away for years at a time?

There is something cold and frightening about the medical assembly line, the way you come out the other end feeling like dressed meat ready for the oven. There is a "NEXT!" feeling that only seems to get worse over the years. Too many patients, not enough time, because the equipment is absurdly expensive, the tests take forever and suck up resources, and it's usually for nothing. After all, somebody important might come in.

But we are stuck with it. In the past, if you had cancer, you just died. Probably horribly, because there wasn't even a good way to manage pain. Unlike today, when it's the banner illness that has spawned a million fundraising walks in every color of the rainbow, it was heavily stigmatized: people didn't even say the name. Probably this was fear, a dread that "something" had taken you over, colonized your body and was eating away at you beyond your control. This "something" would suck out the marrow from your bones, cause you to waste away to a skeleton, and probably drive away all but the most loyal family members who probably prayed that it would all be over soon.

All kinds of stuff has been written about illness, its social and emotional significance, etc. Usually the sufferer is blamed for not having it all together emotionally, for having "unresolved issues" (as if everyone doesn't have those). I wonder now if it isn't just bloody bad luck. Have you noticed how unevenly luck and blessings are distributed in life? Ain't it a bitch, and don't you wish it was different? People still get sick and die, in spite of all that fancy equipment. I've had five friends die in the last few years, and three of them were only in their mid-50s. One who was exactly my age at the time pulled his truck over, opened the door, and fell to the ground dead. Perhaps his fate was better than the woman who battled breast cancer for years, or Glen, one of the most beautiful men I have ever known, who escaped from a psych ward, swallowed a bottle of pills, and was found frozen to death beside the railroad tracks.

Oh, and that's another thing: the war imagery we use, especially for cancer. She "battled" breast cancer, she "waged a valiant struggle", and sometimes she "triumped" or scored a "victory" over it. I wonder why we do this. No one questions it, and when no one questions something I just get furious because we are PEOPLE, not cattle! My feeling has always been that you should question everything, especially loony social trends. The war imagery not only renders the sufferer especially valuable for being a "good soldier" (and we still think the military is special, no matter what anyone says), it places the whole thing at a safe, fictionalized distance, as if we're watching a World War II movie on TV or going to the Cenotaph for 45 minutes to watch old men stand in the rain.

Ah, the stoicism, the smiling in the face of doom. I wonder why people feel they have to do this, why it has become such a cultural imperative. If I had cancer, I think I'd raise bloody hell and be so hard to get along with, NO ONE would come visit me (a situation I should be used to by now). Then again, maybe I'd be terrified. I know I would not be stoical. I'd be shit-scared and probably miserable from all the clinical attention, the being fed through machines with no one talking to you.

I've heard it said that quite often, when you get your diagnosis, the doctor comes in the room, says to the patient "you have cancer", then turns and leaves. If I don't go, I won't hear that, will I? These guys are sons-of-bitches, aren't they? Are there any good ones? Well, OK, my brother-in-law, he's a Gunning man and as far as I'm concerned they're all great, but he lives all the way across the country.

If I don't go, I don't need to hear any of that shit. But if I don't go, this little scritchy-scrabbly feeling in my gut may not stop for a long time. If ever.