I just had to cancel plans with someone. Again. And when I told my friend that something had come up and that we’d have to reschedule, I heard the sigh she tried to repress, and the thread of frustration in her voice. I wanted to tell her why I have to cancel yet again, but if I do I’m sure I’ll hear not only frustration, but doubt and disbelief. Just the way I’ve heard it from other people over the past fifteen or so years. Because no one really believes that someone can experience almost-constant physical pain every single day for that long.
But you can.
It’s scary when it first begins, especially when the pain is in your chest and your left arm. Terrified that you’re about to drop dead from a heart attack, you go to the emergency room. The EKG is normal, though, and they send you home. But it happens again weeks or months later, and you go back. EKG be damned; there’s something wrong and you need to find out what it is. But one day an on-call physician in the ER heaves a disgusted sigh when he looks at your medical records, and then proceeds to give you the most abbreviated and perfunctory exam possible before telling you there’s nothing wrong with you, the sneer on his face making it clear that you’re wasting his precious time. And the minute he leaves the room you cry and resolve to drop dead on the street before you go back to the ER and open yourself up to that kind of ridicule again.
The pain starts to occur with greater frequency, and you decide to switch doctors because your primary care physician is starting to remind you more and more of that ER douche. Tests – so many tests. Expensive, time-consuming tests that show there’s nothing wrong with your heart. And while you’re relieved to know that, it still doesn’t explain why you hurt. There are no triggers. The pain comes out of nowhere, whether you’re sitting still on the couch, walking through the grocery store, or hiking up Kilimanjaro.
Doctors – so many doctors. Because after a while they all start to treat you like the jerk did in the ER that day. So you find another doctor, hoping against hope that maybe a new one can find out just what the hell is wrong. But they do the same tests, prescribe the same treatments. Change your diet. Doesn’t help. Special exercises. Doesn’t help. Prescriptions that dull your perceptions, but never dull the pain. And one day you know you’re going to have to find yet another doctor, because this one has given up on you. You can see it coming in the way they look at you when they enter the examination room. You wait for them to start asking you how things are in your marriage, with your finances, in your job. And here it comes, another round of anti-depressants. Your last doctor prescribed Prozac, so this one’s going to give you Zoloft. Or Lexapro. Or Paxil. Or Effexor. Or Cymbalta. Over the years you’ve taken them all, and none of them touched the pain that’s now spread from your chest and arm to your neck and jaw and your upper back. But you dutifully take the pills, because you hope that maybe, just maybe, this time it’ll work.
But it doesn’t.
The pain is always there. A lot of the time it’s a dull throb, one you’ve learned to live with and, for the most part, ignore. Every now and again you’ll get a sharp, shocking pain, sometimes in your chest, sometimes in your arm, sometimes in your breast – and the female doctor you saw insisted that couldn’t be right because breasts don’t have nerves and so can’t hurt like that – and you hold your breath, waiting to see if the pain will ebb or if it will decide to set up camp and stick around for awhile. Thankfully, those episodes don’t happen very often, the times when the pain is so bad and so unrelenting that you’re unable to do anything but try to go to sleep to get away from it.
It makes you so tired. Pain is fatiguing, don’t let anyone tell you it isn’t.
Fibromyalgia says one doctor. But no, they eventually rule that out. Costchondritis says another. But no, that’s not it, either. They don’t know what it is, and that frustrates them as much as it frustrates you. But their frustration can channel itself into labeling you. Hypochondriac. Hysterical woman who’s getting older and doesn’t like it. Your frustration is different, and often channels itself into anger, distrust, and worst of all, self-doubt. Maybe you are crazy. And then one day you reach for a glass on the top shelf of the cabinet with your “bad” arm, and it brings the pain roaring back, even though you did the same exact thing yesterday and nothing happened. Self-doubt goes flying out the window, because this is not in your head, it’s in your freaking body and it hurts and why can’t someone figure out just what the hell is the matter?
You’ve cut out gluten. And sugar. And dairy, and protein, and everything else until you wonder if you’re just going to end up living on bottled water for the rest of your life. The pain is still there. You’ve taken steroids, winced through injections straight into your chest wall and your shoulder blade, and refused the prescriptions for the harder stuff because all those do is dope you up, and then you’re doped up and still in pain. The pain is bad enough; being addicted to narcotics would be even worse. You’ve had MRIs and CT scans and stress tests and extra mammograms and upper GIs and lower GIs, and they tell you nothing’s wrong. And your doctor sighs and asks you about your marriage and your finances and your job. And you stop going to the doctor, because they can’t, or won’t, help you.
You no longer tell anyone you hurt too much to do things. They can’t see anything wrong with you, and besides, yesterday you were out doing things, right? But yesterday the pain was manageable and you were able to almost ignore that it was there. In fact, you might have had a good run where you were able to ignore it and live a halfway normal life for weeks and weeks. Today is different. So you lie and say your car broke down, or there was a family emergency, or that you have a stomach virus, or the flu, or pinkeye. Anything but chronic pain. And if one of those sharp twinges hits you and you can’t suppress a moan, you shrug it off and tell people you turned your wrist wrong, or put your foot down wrong and turned your ankle a little. Because you know they’re fed up with hearing “I hurt.” Almost as fed up as you are at saying it.
You don’t want sympathy, that’s not it at all. You just want to find out what’s wrong. You just want it to go away. To be able to do something – anything -without the fear that you’re going to set off whatever it is in your body that hurts. To never have to make another excuse, or miss a social gathering, or have to tell a child you can’t pick them up, or listen to one more doctor tell you there’s nothing wrong when you know damn well there’s something not right.
To live without pain.
Is that so much to ask?