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"The American Inquisition"
By Dan Schweitzer
The Betrayal: Chronic Pain
You wake up one morning and your left leg hurts terribly. Maybe you did a little too much on that first day of Spring lawn work, but it hurts so badly you can put almost no weight on it at all. You take some aspirin and wait a few hours hoping it will get better, but it doesn't. Finally, you break down and, because it's a weekend and your doctors office is closed, you go in to the emergency room.
The doctor there sends you to x-ray. When he finally comes
back in to the little ER cubicle, he tells you that your x-rays are fine.
He suggests you take some Motrin and says to take it easy for the weekend.
You tell him it's all you can do not to scream - there
must be something very wrong; there must be other tests that can be run.
"I've run all the routine tests; there's nothing wrong. You probably just pulled something. I'm not about to give you narcotics for a pulled muscle". He says.
"Doctor, you're not hearing me. This pain is terrible! It can't be just a pulled muscle! I've had pulled muscles before."
Your ER doc has lost interest, and he isn't going to argue. He won't give you anything stronger than what you've already been taking, even though you tell it hasn't helped at all. He gives you a prescription for something you can get over the counter, and because you tell him you hurt too much to drive, he calls a cab for you. It takes you almost half an hour to get from the ER gurney to the cab. You go because you have no choice. You hope your regular doc will do something about this. Meanwhile, you owe $178.00 for no help at all. Meanwhile, you have a vague feeling that you've done something wrong.
Unknown to you, the ER doctor has added a note to your chart: "DRUG SEEKING BEHAVIOR".
You don't sleep for more than fifteen minutes at a time the whole weekend. You call your doctors office first thing Monday morning, but he can't get you in before Wednesday afternoon, even though you tell him you can't even get in to work. Three days pass like three weeks.
You hobble into your doctors office bent over like Quasimodo. Your doctor has the ER report.
"The emergency doctor says you were trying to get narcotics. What's up?"
Mystified, you tell him you've never had pain like this before. You tell him the other doctor just poked around and took x-rays. You tell him you haven't slept more than a few hours in five days. You pour out your fears and your concerns: how will you work? How will take care of everything in your life that needs your attention, like your children, your wife?
"Well, look - I can't just hand you a bunch of narcotics
for an injury that I have no proof of. Let me make a call." He goes away
for a while. When he comes back, he says, "I've got you scheduled for a
EMG
and an MRI in three weeks. Let's see what those show."
He gives you a prescription for thirty Tylenol 3 tablets. It turns out
that three or four of them actually help; not much, but at least you get
a little relief. You take them only when you're ready to scream from the
pain and cry from the lack of rest. When you call in to ask for a few more,
your doctor is alarmed and refuses. You have eight days to go before
the test, and of course the people doing the test can't
do anything to relieve your pain, so that means you have to wait until
the radiologist and neurologist read the tests, plus however long it takes
to get back
in to see your own doctor.
"What do I do between now and then??", you ask. "I can't go to work, I can't sleep, I can barely get to the bathroom. I can't live like this!"
"Well", he says, "There's nothing I can do about that. You'll just have to grit your teeth and cope as well as you can. I don't like this; you're acting like an addict." He says.
"I'm acting like a man in desperate pain!", you tell him, but he has other patients to see.
This is the first betrayal; the long, long nightmare has begun.
Three weeks is too long. Finally, in desperation, you go in to three other emergency rooms, and one doctor gives you another handful of weak Tylenol with codeine. You get a couple hours of blessed rest from them, then they're gone. Your boss wants to know what's happening, and there's really nothing you can tell him. He lets you take annual leave, but says he wants a letter from your doctor when you get back.
The EMG test shows some "mild" neuropathy - meaning something wrong, but not much - and the MRI shows multiple disk bulges - not herniations. You almost cry in relief until your doctor tells you that 30 percent of men your age have these and have no symptoms at all. There's certainly no evidence there to show that you're in as much pain as you claim. He won't do anything for the pain, and feels that the tests don't justify his writing an 'excuse" for you full three weeks of absence from work.
You realize that your doctor has called you a liar. He doesn't believe that you hurt as much as you say you do, and he's obviously sure that, despite no previous record of drug abuse, you're angling for powerful narcotics. You feel humiliated.
Your boss is NOT sympathetic, and you still can't work. You ask to see another doctor, but your insurance won't cover it. Eventually, you lose the job.
Your wife, meanwhile, can't believe that you're allowing a little back trouble and leg pain to ruin everything you've both worked so hard for. She says, "Look - I've had back pain and hemorrhoids every since I delivered YOUR children, and I still go to work!" No one seems to understand that the pain is so great it's all you can do to keep from killing yourself - or someone else. She especially can't seem to stand seeing you on the couch doing nothing. "Take out the trash at least!", she'll say. When you tell her you can't lift the garbage can, she says, "My God, what a baby! I can't believe this!"
Eventually, she leaves, taking your children with her.
She's not about to support a malingering husband. It's YOUR job to support
her, if anything. Worse, you feel this way yourself, but you just can't
do
anything about it.
You apply for Social Security Disability. Everything to
do with it takes months, and when you try to find a lawyer to expedite
things, you find that none will take the case until after you've been turned
down at
least once.
As time passes, everything you loved to do is taken from
you by the pain. Everything you defined yourself by is as far beyond you
as the moon. You're beginning to wonder who you are; you don't really know
anymore.
While you're waiting on Social Security, you try a VA
hospital; they see you, but it takes nine hours, you get thirty seconds
with the doctor, and another Motrin prescription. The eligibility department
says that's
all you're eligible for. You try the county hospital,
but they won't prescribe for addicts, which your record now states you
are. Besides, there's a fellow with a sliced artery in at the same time
as you, and all five
doctors are in watching him and his treatment. The one
doctor who finally spends five minutes with you says it's a back strain,
and to go home, rest and take some Motrin. She's not interested in how
long you've been like this, or that Motrin does nothing. She walks out
while you're still talking.
Social Security turns you down on the grounds that you're "cured". How they decided that you have no idea, but it's done. You appeal, and this time you find a lawyer who will take the case on contingency.
While you're waiting, you find a VA hospital that will do much more than the last. It takes almost a year, but they do a CT scan. It shows little, but it shows enough that they decide to do an MRI. Each time you go there you have new doctor. Some give you a handful of pills, some give you nothing. One writes about your, "narcotics addiction". You fight this with administration, and they change it; the doctor involved seems hurt.
You are, meanwhile, sent to orthopedics (they find nothing wrong), drug rehab (they say you have a pain problem, not a drug problem, but no one listens), psychiatry, who decides you're depressed, and gives you a medicine you can't stand - it makes you feel "weird", and makes the pain harder to handle.
The MRI shows multiple bulges that are pressing on nerves,
and pieces of desiccated disk material wedged into nerve roots. The surgeons
consultation comes to the conclusion that there is no operation that would
help; you'll just have to "live with it". You assault one self-righteous
doctor who tells you that narcotics are a tool of the Devil, and you're
a wimp who'll just have to learn to live with it. Perhaps you'll learn
years later - after the pain transmitting nerves have proliferated and
your nervous system has rewired
itself to make the pain permanent - that they could have
operated to remove the pieces of disk and do other things that would remove
the pressure from the nerves. You wish the doctor you assaulted had been
right - you'd happily make a deal with the devil to get out of pain.
All in all, you get maybe two weeks worth of pain pills a month, and have to make them last three months.
You've lost your home, your family, your job, your car, your dignity, your self image, and even contact with your children. Their mother doesn't want them seeing you "like this", meaning living almost like a street person, always "lounging around and moaning." Even before she left, you had been unable to lift the kids because of the pain. She thought it was very selfish of you.
Old friends have stopped coming around, as has the rest of your family. They get tired of hearing that you hurt, of seeing that you have a hard time moving around. You learn to keep the pain out of your voice, your face, your movements. Often, this is a disadvantage, as doctors you see tell you that you, "…don't look or act like you're in pain…". The little pride you have left, though, won't allow you to scream and moan. Besides, who can scream, moan and writhe for decades? And a decade is what passes.
Your personal pride is gone; you can't even keep house for yourself. You have to quit eating for the last five to eight days before the SSDI check comes in - you can't afford it. Your personal appearance is poor - it hurts too much to groom regularly, and besides, all of your decent clothes are falling apart and you can't afford new ones. Suicide looks more and more attractive. Doctors still call you an addict, which makes no sense to you.
You turn down narcotics that don't work for you. You've
tried trigger point injections, steroids - everything that a new doctor
wanted to try. Nothing works well, or for very long. No doctor will give
you
more than a weeks worth of relief at a time, so you often
see several; sometimes you get caught and have to start from scratch. Some
clinics and doctors have blacklisted you. Half the time when you see a
new
doctor, an old one writes or calls him to tell him you're
an addict. They still charge you, but they don't do anything.
One day you find you can't stand at all; you can barely
crawl, and that causes you to scream. You get the ER by taxi, as you can't
pay for an ambulance. Two disks have herniated, and they decide to operate
tomorrow morning. Tonight is the night your girlfriend
decides to break up. She just can't take your self-involvement any more.
After the operation you still hurt, but it's better than it ever was -
for about a
month. Then you're back in the same old condition. They
operate again, with the doctor literally shouting at you and telling everyone
who will listen that you're an addict and a liar. Another doctor finds
more disk
material in your spine, though, so they operate again
- after only two months.
The operation helps a bit more, and you use the slight added mobility to go to some other town, where the same cycle starts over again.
You've gathered information over the years about current
research that shows that chronic pain patients don't get "high", which
you've known. You have documentation that shows you SHOULD be in
pain, and that narcotics are the only possible treatment. Still, despite
all of the information and documentation you have, to most doctors you
are an addict, and no amount of proof will change their minds. Even though
every independent study done says that constant pain requires constant
treatment, even though when you HAVE the narcotics your life and functionality
improve (an addict does just the opposite), despite new medical guidelines
for the treatment of chronic pain, despite everything that is technically
in
your favor, there is little or no change in how you are
- and are NOT - treated. You've been labeled useless, an addict (the PC
term is now "drug seeker", but it means the same thing), and it's almost
impossible to have such labels changed. Worse, it's hard not to believe
it yourself. This and your pain are your life forever now.
This is the last betrayal: you betray yourself by finally believing that you really are worthless.
by Dan
Schweitzer
June,
2000
