I'm now walking a second mile in another man's moccasins, and it's no more enjoyable than my first mile.
Many doctors cringe when they see a chronic pain patient on their day's schedule, or at least certain chronic pain patients. Some of that dread isn't directly caused by the patient him- or herself, but rather the deluge of third-party administrative demands: workman's compensation updates, disability applications, insurance forms, lawyers' letters, etc. Still, even when the patient comes with no untoward paperwork needs, pain patients can be a difficult bunch to cope with. If it's not the long wait for a referral that has them in your office every other week, it's the pills that didn't work. If it's not the physiotherapy that aggravates things, it's the escalating dose of opioid that's pushing the limits laid out in the guidelines. Even the patients you have a fabulous relationship can wear on you, to say nothing of those days when you'll do anything to get them out of your office.
Can we learn anything when that patient is a doctor?
That's where I am right now, going through a bout of sciatica I could truly stand to do without. It's my second go-around with prolonged pain in the past ten years, albeit for a different diagnosis. Why share it? For any health professional reading this, I hope I can give you a bit of insight that you probably won't read in a book, can't be articulated by a patient, and you might not be able to "get" until you've been through it yourself. For those of you that aren't health professionals, it's not medical advice. But maybe it will provide a bit of comfort to know that those of us in health care are not invulnerable, and certainly not infallible. At the very least it might help you understand what a friend or loved one is going through.
With that in mind, here are my thoughts on life with chronic pain, beyond the fact that it sucks.
Not knowing can be as bad as the pain itself. Even when the symptoms match the textbook word-for-word, they're ultimately subjective. No matter how educated, or rational, or trusting in his or her doctor's opinion, the patient is going to self-diagnose, self-prognosticate, and self-treat using whatever references and technology are at hand. If you consider that prolonged pain can impact upon one's job, one's family life, one's social life, etc., we shouldn't be surprised that people will turn over any stone they can for answers and relief. It's also why a prolonged wait for diagnostic tests or referrals should never be brushed off.
Chronic pain is toxic to your mental state, even if it doesn't cause outright mental illness. Not everybody with pain needs medication for depression or anxiety, stigma or no stigma. But anyone who's dealing with pain will go through ups and downs that run the gamut of negative thoughts and emotions, and go through it more often than someone who's not in pain: irritability; dread; despondency; anger; impatience; poor focus; apathy. It can change minute to minute, or day to day. It goes without saying that this will have a profound effect on the person's family life. Doctors, ask the spouses about it. Patients, please come forward with it.
It's not necessarily the pain that's the problem, so much as the interference in everyday life. I'm not even talking about the obvious, like not being able to work if you're a laborer, or giving up sports. Pain can interfere with as simple a task as bending over to tie a shoe or getting in and out of a car. This can be an opportunity for creative problem-solving for doctors, caregivers, and patients, independent of treating the underlying problem. It can also allow for gains outside of the more immediate concern of work.
It's not "pain behavior", it's trying to get comfortable. It's a crapshoot getting into a chair for me some days. Sometimes I'm fine wherever I plop down, other times it takes me several minutes of wriggling and squirming. Quite often I have to stand up and try again from a different angle. A twinge can come without warning, and sometimes the position I'm in that was initially comfortable - say, leaning more on one side - causes an ache a few minutes later that makes it necessary to find a new position...a process that can take even longer than it did the first time. None of this means I want or need a pill or surgery. It's just the way it is with pain.
Pain is unpredictable. I have hours where I need to lay still and hours where I need to be up and moving. I have days I can play tennis and days I can't fold a basket of laundry. Some days I'll feel great for hours on end, then all of a sudden need to stop what I've been doing, as if I was hit by a foreign object. There's no rhyme or reason to the symptoms, no task that predictably brings on or avoids it.
Pain is tiring. I can get a wonderful night's sleep for a full month, get a decent enough amount of fresh air and exercise, and still need more rest than when I'm at full strength and as sleep-deprived as an intern. I'm sure there's a perfectly good explanation for why pain is tiring - endorphin loss, increased neurotransmitters, whatever - but the point is that pain is tiring. Independent of the physical discomfort, reduced mobility, and changes in mental state, pain wears on you. Some of it might be sleep-related but overlooked, like an uncomfortable trip to the bathroom in the middle of the night. One way or another, though, a need for rest comes with the territory.
Finally, pain and its effects are insidious and leave scars. If I could propose a hypothesis, this is where doctors went wrong in treating pain as a "vital sign" (though by no means do I mean to exonerate industry). Being in pain at any given moment or on any given day can be managed. What can't be easily managed is the long-run effects on independence, employment, one's mental state, and especially one's family life. Even complication-free treatment of a reversible cause - joint replacement, spinal disc repair - treats the cause but not the effects. Mobility takes time to recover. Anxiety over every innocent twinge takes longer to fade. And family or social relationships? Some of that turns out to be irreparable.
Obviously, this is only a single opinion. It might not apply to you if you have pain, or as a clinician if you treat pain. Based on the surveys and the exploding problems with opioids, however, clearly both caregivers and patients can do better. If this helps even one person understand pain from either end of the stethoscope, so much the better.