Chronic Pain 101: Insights for the unafflicted.

This last Saturday I got up early, took a leisurely shower, washed and conditioned my hair and then set off with my husband for our local warehouse store for the monthly bulk purchase of staple goods. After the store, we took the purchases home and put the 9 lbs of butter that was on sale into the freezer, then headed out for a late breakfast and our weekly grocery shopping. After unloading the groceries we again headed out, this time to a hobby shop he’s been dying to go to, then a stop for a late lunch, then on to the supermarket-sized plastics store where I was finally able to find the food storage containers I have been needing and even the kitchen scale that was, surprisingly, not stocked by the warehouse store. From there we went home for a little TV and R&R.

Unremarkable? Maybe for you, but it has been more than a year since I have been able to take on such a day without being sidelined half way through it with crippling, unrelenting back pain. The day was more like a miracle for me because only one week before, I had been unable to take on even half that without resorting to opiate pain meds and stops to rest and release the muscle spasms in my back every ten minutes or so. Then, a week before this remarkable day, I was treated by a neurosurgeon with massive injections of corticosteroids in my lower back. Within hours my stamina had improved and within a week my ability to stand and to walk had reached near normal.

But it was a long road to this juncture, this point where I was able to return to near-normal functioning (I still have to wear a back brace and lose some weight), a road fraught with scepticism, doubt, dismissal and frank disbelief on the part of people around me, doctors included. I had had several x-rays that disclosed arthritic damage to my lumbar spine, but it was decided, by those who did not share my pain, that the damage was not sufficient to induce the kind of debilitating pain I was complaining of, and so it was dismissed with the trivializing “lose some weight.” Nobody wanted to hear that the back pain pre-dated the weight gain…everybody, friends and family included, simply decided if I was thin, my back wouldn’t hurt. As a result, I not only did not receive adequate medical intervention, people treated me as if the pain did not exist (it’s my fault, therefore I deserve no sympathy, therefore they can expect me to perform as if the pain did not exist). Worse, I took to dismissing it myself. Finding no avenue of relief other than spending as much time as possible sitting, the weight didn’t shift but the back pain slowly grew into a monster that controlled my life.

You cannot explain to a person what a pain feels like. It is simply not possible. And chronic pain is in a class by itself, even if it is not high level. People whose experience with pain is brief and acute…a prolonged labour is brief and acute compared with months and years of daily, hourly, every-waking (and sometimes sleeping)-minute pain…simply cannot relate to the chronic pain sufferer and how it shapes virtually every choice in their lives. Without the empathy that sharing the pain can bring, people can easily judge the chronic pain sufferer or, simply, over time, become exasperated with him/her and lose all patience…and perspective. We, the pain sufferers, learn to shut up, to stuff our feelings, to attempt to do more than we should in an effort to not alienate family and friends, to not get fired for being a malingerer, to get through the day. And still, even with superhuman effort, we must fall short of our goal to “live normally” because the pain makes choices for us, choices we would not make outside it’s pernicious influence.

“Wanna go on a 5k run with me Saturday?” a friend might ask then, remembering you have back pain, amend it with “you can walk…” No, friend, I can’t walk 5k…I can’t even walk to the other end of the house some days without having to sit down.

“I’ve got vouchers for this great food and wine fair…wanna go with?” Does the venue have lots and lots of seating scattered about? Will there be non-alcoholic drinks because I can’t mix booze with my pain meds. Is the parking close to the venue? Because unless the answers to all three questions are “yes,” my back won’t let me go.

Chronic pain, regardless of where it resides, can influence virtually every decision a person makes. Drive to the market and find the parking lot crowded…drive home because there is no way you will have the stamina to walk from the furthest reaches of the parking lot, do the shopping in a store that provides no benches to rest on, and then walk back to the car…never mind having to unload the car and unbag and store the groceries. Grocery shopping can be an overwhelming task for those of us whose pain only waxes and wanes but never subsides.

The worst part is living with the eventual impatience and lack of empathy from close friends and family members, the resentment that your limitations imposes on others. Recently my husband and I went to a resort. He had to partake in some of the resort’s activities solo because I just couldn’t walk that far, participate, and then walk back. One excursion had my back exhausted when we had walked only half way to the venue.

But worst of all is dealing with doctors, particularly those who dismiss the pain. “Lose some weight” a rheumatologist once told me, and refused to treat me until I did. What part of “I cannot exercise…I cannot even walk for a single city block…with this pain,” did he not hear? Or how about the doctor who read the x-rays and decided that his interpretation of the x-rays told him more accurately about my pain than my personal experience and therefore no procedure or pain-mitigating drug was warranted.

I recognize that recreational drug-seekers make it tough on people who have legitimate pain, but that doesn’t excuse dismissing someone with long-standing chronic pain. How do you tell them apart? Well, maybe you can’t, but is it better to send someone in crippling pain away untreated or to mistakenly treat someone who is faking? The dismissive attitudes I have encountered with regard to my pain have, over the years, driven me to conceal it, to “suffer in silence” as it were, and to live my life increasingly homebound. When someone rolls his eyes or exhales a huge puff of exasperated air because I can’t walk “that far,” it used to irritate me…how insensitive can a person be, for mercy’s sake, I am hurting here. Now I feel hurt…and guilty…that I get no empathy and that I cannot just make a wish and the pain will disappear.

This neurosurgeon was a breath of fresh air. A couple of weeks after seeing him, I was being interviewed by a physician as I was joining a diabetic clinic. I put my meds bag in front of her so she could see what I was taking on a regular basis and when she pulled out the pain meds from the neurosurgeon, her eyebrows rose. “DF 118?” she said, her voice surprised. “You must be in some serious pain.” Yes…serious pain…and after more than a dozen years of suffering with it, I finally found a doctor who takes my serious pain seriously…although the clinic doctor probably did not until she saw the degree of pain relief the specialist had prescribed for me.

If you must interact with a person who suffers chronic pain, here are some things you need to know, understand and practice.

1. They aren’t doing it on purpose. Chronic pain has a mind of its own. Depending on the condition, the person can be relatively OK one day and barely able to move another. This does not mean that s/he is using the pain to excuse her from what she does not want to do. Some days I could bend over and pick up a pin from the floor…other days I was doing well just to touch my knees.

2. Losing weight is not a panacea. Yes, it may be helpful to some people with some conditions, but you simply cannot dismiss chronic pain in a person as the result of excess weight. Some of us got the pain first and the immobility dictated by the pain helped the weight to add up. Even it the pain is caused by excess weight, telling the person to lose weight neither ameliorates the pain nor makes exercise a feasible suggestion. Have some compassion—and if you can’t, then keep your mouth shut.

3. Come up with compromises: rather than expect the person with the pain to come up to your level, throttle back your expectations to theirs. Instead of a day walking around the mall followed by walking around a museum or aquarium or outdoor market, plan a day that includes frequent rest stops…sitting on a bench to look at a display window, stopping at a café for some coffee, breaking up the day with a movie. Don’t wait for your friend to expire with pain and be forced to beg a rest…offer a rest periodically…it will do both of you good.

4. Never dismiss someone’s pain, not even with your facial expressions. No eye-rolling (“oh no, not again!”), no “are you sure it’s that bad?” no “Oh, c’mon, it’s just another block…” Trust me, by the time the chronic pain sufferer brings it up, it is already at the unbearable stage. I have walked in malls until my back hurt so badly I could barely move my legs. This, of course, slowed me down, which slowed my companions down…do you think being annoyed with me would have made it any better?? Being impatient or dismissive or exasperated is unproductive both for you and for your friend in pain, and it actually adds to the pain with feelings of guilt. Believe me, if your friend could wave a wand and take the pain away, she would, in a heartbeat, and then run circles around you.

5. Don’t offer a host of non-traditional remedies, if you must make suggestions, stick to conventional medicine. Why? Because the time for non-traditional treatments is after the conventional workups are done and such things as tumours, bone spurs, infections, ruptured disks, broken bones and other things that could be causing the pain are ruled out. My grandmother had an infection in her spinal column that kept her bedridden and on antibiotics for weeks until it cleared up. Had she opted for some non-conventional treatment instead of the investigation that found the infection and the drugs that cured it, she may well not have made it to her 84th birthday…she could have died of encephalitis, had the infection remained untreated and it migrated to her brain.

6. Don’t tell the person to “ignore it and it will go away.” Pain is a symptom that something is wrong. It is like shouting: the worse the problem, the louder the shouting (the more pronounced the pain). Too often well-meaning people use this phrase in a misguided effort to help but believe me, if the pain is truly chronic…which means it has existed over an extended period of time…the sufferer has already exhausted his ability to ignore it and the pain has broken through that barrier. Don’t suggest hypnosis, either…the only thing to suggest is to see a doctor and if the sufferer has done that and gotten nowhere, then suggest different doctors or simply shut up and empathize. I quit trying to find a doctor to treat the pain for years simply because the doctors I did see were so dismissive…if they gave me drugs at all, they wouldn’t kill a headache, let alone chronic lower back pain. It was not until it got so bad I couldn’t stand long enough for a proper shower that I started going to doctors again…and this time I got lucky.

7. Try to up your own empathy and patience quotient. It will not only be helpful in dealing with a friend or family member who suffers chronic pain, it will help you in many other areas of your life as well. People who hurt can be depressed, angry, impatient, despondent, and difficult in other ways as well. They need compassion (not pity) and patience (not long-suffering on your part) and a willingness to accommodate their limitations without rancour.

Life without pain is preferable, but for some of us, it is an elusive goal. If there is someone in your life who suffers chronic pain, try to remember that it is not a chosen way of life and most of us are simply doing the best we can with what we’ve got. Give us some encouragement…and a break.