LESSONS OF PAIN
WHEN (SOME) DOCTORS MAKE IT WORSE
For more than 10 years now, I have been living with the symptoms of what is sometimes described as “chronic multiple neuropathic pain”, or sometimes as “reflex sympathetic dystrophy”, a condition further exacerbated since 2009 by an overreacting immune system, disc herniations, nerve damage, spinal stenosis, sciatica, rheumatoid arthritis, venous insufficiency, by swelling of legs and feet, often with large burning rashes, long-lasting episodes of extreme fatigue associated with breathing difficulties, and by other convolutions that, frankly, I could do without.
It’s been a long way since it all started, and I remember when pain was singular, affecting only one arm, as if it was a very bad sunburn. Medication and special creams had not worked, and after a couple of years like this, “nerve displacement” surgery had been deemed necessary. But, by that time, pain had become plural: it was creeping in the other arm, in one leg, then in the other leg, in the feet, under the feet, in the shoulders, in the neck and along the spine. It had been joined by numbness, pins and needles, intense itching and burning, muscle stiffness, and sometimes all those simultaneously. Today still, pain can appear suddenly where there was none before, like this recent sharp shooting in both wrists and in the fingers. As long as that pain lasts, I can’t really use my hands.
I used to think that there would be no ending to the learning curve. From one remission to the other, from one painful episode to the other, my existence was being rocked almost constantly between hope and its opposite. But now I like to think that I’ve finally come to terms with it, and I try to enjoy as much as possible those exquisite moments and days when pain takes a break. I don’t lie to myself anymore: I know pain will be back, and I accept it as part of my new life.
I still find it difficult to answer the one question asked every time by doctors: Which pain is worse. It’s not that I don’t have much choice. I usually end up saying that it is this intolerable pulsating pain in my lower back. It goes on for hours, for days. Morphine doesn’t help (but cannabis does for a little while). I can’t read, can’t concentrate, can’t sit for long, can’t stand for long, and sleeping is possible only after moving multiple times between the bed, a chair, a sofa, the floor, and when I’m finally exhausted.
But maybe the worst part is when pain attacks more than one spot on my body simultaneously, making it very difficult to walk, or to turn my head, or to use either or both arms. Or perhaps it’s that acute burning in one leg that makes it very difficult to wear pants, tolerate a touch or even a gust of wind.
The one thing I don’t mention anymore — but which I intend to discuss here — is that, without a doubt, the most difficult and frustrating experiences I’ve had during a number of years were my attempts at getting help from the medical world. The more complicated my condition was getting, the more difficult it was to find doctors, or specialists, who could , or would, help.
A few did try, while many others were arrogant and insultingly dismissive; some were completely lost in the face of my symptoms, especially since they kept disappearing and reappearing. Which is fine with me, I mean, even doctors don’t know everything. But others, it seemed, could not admit not knowing, and instead used a well-known recipe for dealing with a patient with chronic pain: tell him he’s exaggerating, or even lying, invite him to “man up”, and make sure to mention that it’s probably “all in his head”.
Rather than trying to help, as doctors would usually describe their mission in life, they acted like special investigators administering a lie-detector test. My pleas about pain being very real often fell on deaf ears, or were treated with apparent indifference, by doctors who, it seemed, would believe something was wrong only if I got there with blood all over me or if I was carrying one of my legs in a bag full of ice.
I became desperate to find one doctor, just one, who would listen, and who would actually take time to think, instead of sending me back home with a bizarre smile and a Tylenol. I was starting to believe that this doctor existed only in movies or television shows. Ultimately, I did find one, but not before meeting more obstacles.
One specialist, wearing a condescending smile, rolled his eyes, looked at the ceiling, and said this:
“Oh, come on now, it can’t be that bad!”
One specialist flatly refused to treat me. In the first minute of my arrival in his office, he said this:
“I don’t understand why your doctor sent you here; I can’t help you. Goodbye, Sir”.
I lost three hours at work for that…
One specialist, after barging in the room where her assistant was doing a test, as if she had just remembered she had an appointment with a patient, enquired as to why I was there. I thought I was supposed to enumerate my symptoms. That turned out to be a mistake.
With an impatient voice, she loudly cut me short:
“That’s not what I was asking you. I want to know what specifically brought you here today. That’s all I want to know!”
She proceeded to ask a series of questions in rapid succession, never leaving time to give what could approximate an intelligent answer. At one point I conveyed my unhappiness with her ways. She calmed down for a while, but as soon as I mentioned that, as a result of a particular pain, I had recently broken some plates or glasses while doing dishes, oh boy! did I ever get the bad part of an interrogation. She behaved like a cop who had just caught a suspect in the middle of lie.
I staggered out of there bewildered, angry at her, at the medical establishment, and angry at myself for letting this well-paid bully treat me like this. I almost turned around to give her a piece of my mind, but then I realized that this was not the kind of fight patients usually won. Better keep walking…
Weeks later, during a follow-up with my family doctor, he looked at the report she had sent and said:
“I don’t know what went on in there, but it’s clear that you need to be seen by someone else”.
I am limiting myself to those three examples, but other meetings with specialists were as bad. I have no hesitation whatsoever to say that what these doctors did was to intensify the mental anguish of a patient already suffering from repeated periods of severe physical pain and who was just asking for help. Shame on them.
However, slowly but surely, actual findings started to be made that could ultimately explain some, if not all, of the symptoms and the pain. And more stuff started happening: the severe swelling of my legs and feet, and subsequent incapacity at walking, could not be ignored; the large, reddish, badly burning rashes that were now decorating those legs and feet could not be ignored; the photos I took of the blood I was spitting more and more often could not be ignored; and the repeated “positives” given by four successive blood tests, indicative of some inflammatory process going on in my immune system, could not be ignored any longer.
It is ironic to say, but some good came out of something getting worse.
Still, at the dawn of a new year in my new life, it’s not lost on me that a once energetic man who always took pride in his work cannot be employed anymore; a man who used to walk dozens of blocks almost every day is now having difficulties to even cross the street sometimes; a man who during a day’s work could easily jump and run from one activity to another, now cannot do simple things, such as laundry, vacuuming the carpet, holding a bag, or just going to buy food, without ending up in debilitating pain and with the irrepressible need to sleep in the middle of the afternoon; a man who used to enjoy a good beer, or two, in the company of others must now find contentment in the momentary relief brought by his daily doses of morphine, the occasional marijuana, and the less pleasant side effects of methotrexate.
Well, you know what, that’s life, and it’s mine. How was your day, by the way?