[Content Note: Chronic Pain, Medical Professionals]
I have chronic back pain. When I was fourteen years old, I was diagnosed with scoliosis and I underwent spinal fusion surgery. Everything seemed to go reasonably well, and I healed up about as well as was expected. I grew up, became too old to continue my yearly check-ups at the children's hospital where I had been treated, and on paper I became a perfectly healthy adult.
Except for one little problem: I hurt all the time.
It started out with minor aches and pains in my neck and back. Each time a pain popped up, it was named and given a reason: My back hurt because I'd sat in that uncomfortable chair Tuesday, and I wouldn't do that again. My neck hurt because we'd sat too close up to the screen at the theaters last weekend, and I'd remember that for next time. My back was sore because I'd swam too hard at the school pool, or because I'd taken the bumpy country road when I got lost coming back home that weekend, or because I'd sat for just a little too long watching TV and I needed to remember to get up and stretch more often.
Sometimes I hurt so much that I couldn't get out of bed in the morning. I couldn't walk without tears of pain streaming down my face. I needed a cane at the age of twenty-one just to get to class. These were the bad days. Most of the time, though, the pain was simply a constant companion, something that I almost didn't notice after awhile, and something that always had some reason at the base of it. I needed to be more careful. I needed to take more precautions. I needed, in short, to be psychic: to anticipate and avoid every conceivable source of pain. I would be more careful next time.
Of course, I wasn't completely blind to the suspicion that something might be wrong, or at least more wrong than just my being delicate. I went to doctors -- quite a few of them in fact -- who took x-rays, ordered tests, glanced at the results, and threw pills at me until I went away. (Metaphorically speaking, of course.) But the pills rarely helped, and frequently came with side effects that made things worse: one round of medications kept me from sleeping for five nights in a row before I stopped taking them altogether.
The medical records I have from that time period -- records I later requested under various government disclosure rules -- piece together a picture in which the majority of my care providers didn't seem to take me seriously. Several doctors noted that I weighed more than they would have liked, and linked that weight to my constant back pain: my spine was presumed to be too delicate to handle a few extra pounds on my frame. My weight was not, in retrospect, surprising given that the slightest physical activity that would raise my heart-rate would also confine me to bed for days afterward, but this was apparently not the doctors' problem.
At least two doctors made notes in my file that I was "depressed" and that I "cried during visit". I remember the crying, and I remember the cause very clearly: I broke down in tears after eight visits in one year because I was in constant pain and the pills weren't helping and I just wanted it to stop. But during that visit, anti-depressants were added to my repertoire of pills, because a crying woman in the office meant that her serotonin levels were clearly out of whack and medication was needed. The anti-depressants didn't make me feel better about the constant pain, but they did cause me to faint five times in one particularly hot summer. I stopped taking those, too.
When I moved back home after college, I had the extreme good fortune to learn that a dedicated scoliosis center had opened up within an hour's drive of my house. I gathered up my courage and my x-rays -- years and years worth of x-rays and CT scans -- and made an appointment. I fully expected to hear more of the same: nothing was wrong with me, the surgery had fixed everything, I "shouldn't" be in pain. (No one ever said it was all in my head, just that I "shouldn't" be in pain. Conclusions were drawn.) I was prepared to finally accept this, if that was the diagnosis.
The scoliosis specialist greeted me warmly. I told him my story in as few words as possible, aware that his time was valuable and embarrassed to be taking up so much of his with my constant imaginary pain. He put my x-rays up to the light and made that "tsk" noise that doctors like to make. He said, "I can tell you exactly what is wrong with you."
At that moment, I wanted to embrace him. I wanted to hug him and tell him that he was the first person, ever, to seriously conclude that my pain wasn't imaginary. I wanted him to know that he was a good doctor, the best doctor, and that I was forever grateful. I wanted to cry.
He continued, "...but I just can't understand why no one has noticed this before." That last question is a question that I can't answer. When he showed me the problem -- that pseudoarthrosis had occurred and that my childhood surgery hadn't properly fused all the vertebrae that needed fusing -- it was as clear as day on the chart. I could see it myself, once he showed me what to look for. I've since shown the x-rays to friends and relatives, and once I tell them what to look for, they see it immediately. Why did none of my other doctors see what is one of the most common failures of spinal fusion surgery? I don't know.
I haven't yet gone back to my doctor. The only real solution is to go in for another surgery -- the same surgery as before, really -- and redo the fusion properly. Medical science has changed in the last decade; they're confident that they can fix the problem. My daily struggle with pain will probably become a lot easier... but of course, no one can ever say how much of an improvement there will be. I plan to go in for the surgery someday in the next couple of years, but it's a lot to wrap my head around -- they tell me I will be out of work for at least 12 weeks. That's 3 months. That's a season. A whole season of my life. It's a lot to mentally work out.
In the meantime, I still struggle with pain on a daily basis. The pain is easier because now I know it's not just in my head. At the same time the pain is harder because now I know it isn't just going to go away on its own someday if I try hard enough.
The worst part about chronic pain is the guessing games. There's the preparatory ones: Can I go to the movies today or will I pay for it later? Can I go bowling with the group or will lifting the balls throw out my back? Can I go on this road-trip with Husband or will it leave me flat on my back for three days? This is basic Spoon Theory stuff, and chances are you already know it. (If you don't, read it. It's the best-written treatment of chronic pain I've ever read. You will weep.)
These preparatory questions are also rather easy ones: the answer is always, "no, you can't go unless you want to pay for it later". The question isn't really to determine the answer (the answer is always the same), but rather to judge the decision: do I want to pay the spoons for this activity? Can I afford to? The questions provide a degree of control: you're deciding to buy a pleasant or necessary activity, and you're expecting to pay with pain. It's the questions that come in the wake of pain that are the hardest: the analysis and explanatory ones.
When pain first starts, the analysis questions kick in: Where is the pain? Upper or lower or in-between? How bad? Sharp, stabbing, dull, throbbing, 8, or 9, or 10, or more? What hurts the most? Sitting or standing or walking? Can you get to work? Will the hot shower help? Will Icy Hot or pills or muscle rub help? Will the kinks work out over time? How bad is it really? Are you crying because it hurts or because you're frustrated? Can you get out of bed? Can you walk it off?
The analysis questions are important because they help you come to grips with what you can and can't do to minimize the pain, and what steps you have to take. They will also be asked of you by everyone you encounter during your pain, so it's best to have the answers straight in your mind beforehand so that you don't ramble on for hours. (You are, after all, nothing if not a polite person with chronic pain.) The analysis questions are also infuriating because as much as you understand why the analysis is necessary, it's also essentially unfair to ask you to categorize and pigeon-hole something as awful as pain. You don't want to describe the pain, you just want it to go away, and right now. Asking yourself to give it a label is asking yourself to acknowledge that it's going to be around long enough for the label to be necessary.
When the immediacy of the pain is past and the analysis is complete, the explanatory phase sets in. The pain absolutely must be cataloged and explained. Your brain will not rest until you know what, precisely, caused the pain so that you can avoid it again in the future. The cause is not "because I have pseudoarthrosis". That is not a cause your brain will accept. There are low-pain days and there are high-pain days and you believe -- because humans are creatures who look for reasons and explanations in seemingly random patterns -- that there must be a difference in your behavior and surroundings that can account for the differences in pain. And even though you know you shouldn't, you hold tightly to the belief that somehow you can deduce the precise behaviors necessary to game the system in your favor: you, too, can have a pain-free existence if you just try hard enough.
What caused the pain? Is it your desk chair? The couch? The bed? (Dear gods, don't let it be the bed. We just got one of those expensive ones six months back, don't let that be a waste.) Did you swim too hard last weekend? Play too long on the computer without stretching? Did the walk you took around the neighborhood yesterday evening wear you out? Was it the car? The grocery shopping? Did your physical therapist massage you too hard in your session this week? Not hard enough? Could it be the toilet seat? (Maybe we should get softer ones, like those cushion-y things that Bob installed in his house?)
Maybe you need to start yoga again? (It hurt last time you tried, but maybe if you stick with it long enough you'll have a breakthrough and everything will be lovely forever.) Could you try a different sleeping position? Can you try sleeping on your stomach or your back or your sides? Maybe you should try to wake up every few hours and readjust your body into a new position? Would more hot baths help? Should you go back to the doctor and get another x-ray just in case something has deteriorated inside you? Will the visit be worth the $400 price tag? What if they don't find anything? What if they do?
Do you think it's the heat? Or maybe the humidity? If you hold on until the weather changes, will the pain go away? Is it from picking up the cats -- are they getting too heavy to lift? Is it the hard tiles on the kitchen floor? Was is the yard work you helped Husband with last month? Is it your bra? Your shirts? Your jeans? Do you need to buy looser clothes so that they don't irritate your back? Maybe your shoes aren't spongy enough anymore, should you get new shoes? What about your pillow? Is it supporting your neck properly?
I could go on for pages. I'm not making any of these questions up: when I have a major flare-up, these questions swirl around my mind endlessly, over and over, for hours. Until the pain ends, really. Relatives and co-workers will each ask the same question: "What do you think caused it?" It's an innocent question, but it's the question that torments you for hours and hours because if you could just somehow pin-point what caused the pain, you could avoid it. You could make the pain stop.
It's a fantasy, of course. You can't make the pain stop because you have a bad back. But it's a fantasy that has dangerous roots in reality: some chairs and some beds and some activities and some pillows do make the pain worse. And some make the pain better. When you are lucky enough to identify a problem and solve it, the chronic pain improves... at least for awhile. But it's an endless race, a constant parade of pounding questions that can be just as bad as the pain that triggered the avalanche of doubts and worries.
The problem with long-term "pain management" isn't so much the "pain" part. The pain is bad, no doubt, and it's the root of the problem. But the "management" part is the part that will drive you in mental circles for hours, searching for some perfect key that will make everything better. And I honestly don't know if the "What do you think caused it?" question is a question worth asking... but I know it's a question that so far I haven't been able to stop pondering.
Update: Re-reading this, I realize I haven't explained why I wrote this. I don't want people to read this so that they'll feel sorry for me and send me stuffed animals in the mail, but rather I wrote this because I hope that other people in pain might read this and recognize the "questioning" urge as natural but not imperative -- essentially, you're not alone. :)