What would you do if you learned from this moment until you died you would be in pain? Not something mild like an occasional headache, but something that overwhelms every one of your thoughts, feelings, and actions.
For those who are willing to think about this very uncomfortable possibility, your answer might be based on a theoretical, religious, or spiritual conviction. You might think about something you’ve read or a workshop you attended where it was asserted that with enough focus, the mind can reduce the severity of pain, or even eliminate it. And in looking back at your past, you may find instances of being able to do just that.
I recently read a book written by a well-known awareness advocate who wrote that with sufficient focus on the present, a person could separate herself from the pain that was being experienced. A religious writer wrote about the redemptive value of pain as if it was in the same category as a confession. The problem with many of these books on pain management and acceptance is that it presents a picture of what someone who is experiencing pain should be able to do. Often in these books pain is described as something that is static and bounded by specific borders (i.e., in pain and out of pain).
As someone who routinely sits with people suffering intense pain at the end of their life, I’m constantly amazed by the discrepancy between what many writers describe that the mind is capable of doing and what I see it doing. It’s analogous to looking at a 1930’s map of Los Angeles and trying to find a road in a section of the city that didn’t exist until 1960.
I’ve always found more truth in what I experience rather than what I find in theories. And that’s the case with pain. As I recover from a successful total hip replacement, I’m trying to understand the psychology of pain. Both from my perspective and those of the people who I serve, who knew that although the palliative medicines they received made the pain “tolerable,” it would remain present until they died, which for some was measured in months. For those with chronic illnesses, the time frame was years.
So what follows is a personal perspective, devoid of theories, concepts, or even the latest research on pain management. It’s a view of pain that I think will resonate with those who experience it, provide a roadmap for those who will eventually experience it, and hopefully help family and professional caregivers who are responsible for loved ones and patients living with it.
THE INSTRUCTIONAL NATURE OF PAIN
If you view yourself as a compassionate human being, don’t ever try to convince someone who is experiencing pain that there is much to be learned from it. Yes, it can be instructive, as I am sure it was for an Abbess of a northern California Buddhist monastery who was dying from cancer accompanied by intensive pain, and thanked the Buddha each evening for one more day to achieve enlightenment. I think most people who experience pain would prefer a lucid conversation with a friend over a bottle of 30-year-old rum. Pain is a sharp point of living that you may not be able to run away from. But it shouldn’t be romanticized.
PAIN REDUCTION THROUGH AWARENESS OR CONCENTRATION
There is no question that meditation can reduce the pain associated with some things like a headache, sprained ankle, or localized pain associated with the healing of surgical sutures. But once we go beyond these types of pain, we enter into a very different world.
A few years ago when I was rushed to the hospital because of intense chest pains I was unable to use any of the meditative techniques that had been successful after a past surgical procedure. Was it because my skills as a meditator dwindled? No. The pain was so intense that there was no room for anything else in my consciousness. Not my practice, not what I thought I would experience before I died.
Fortunately, it wasn’t anything serious. But, it definitely was a “teachable” moment that made me realize the discrepancy that exists between what we think we are capable of doing, and what we can do in the presence of excruciating pain, may be unbridgeable.
Think about a child’s teeter tooter. If both children weigh approximately the same, the slightest amount of added weight on either end will pull that side down to the ground. A little more focus, and the pain can be minimized. But what happens when the child at one end weighs twice as much as the other child. Or three, or four times the amount? A little more focus may have no effect on reducing the pain other than making us feel guilty about not being able to endure or control it. I think it might be similar to a husband telling his wife who is in labor how important it is to relax.
THE SPECIFICITY OF PAIN
When most people think about the pain, they’re thinking about a specific time period—when it’s happening. But pain has porous boundaries. For example, after my surgery I knew that once my non-operated leg was in bed, I would have to lift the operated one. And while I wasn’t feeling any pain at that moment, I anticipated what I would be shortly experiencing. And the reverse happened when I got out of bed. The actual pain lasted only a few seconds. But the anticipation of it continued as long as I thought about it.
Pain is not confined to just when it is experienced. Sometimes the dread of anticipating it is more debilitating psychologically than the pain itself. Imagine being faced with making a decision to do something you know will cause you immense pain, but something you know has to be done. And if you had to make that decision, as people with chronic and terminal illnesses do every day—maybe dozens of times a day—how much would that change you? It’s not only pain that changes personalities, but also the anticipation of it.
THE UNPREDICTABILITY OF PAIN
A hospice patient once said to me that she had learned to live with her pain. What caused her the greatest problems was not knowing how long it would last, or once relieve came, how soon it would leave. With pain often comes uncertainty. How intense will it be this time? How long will it last? How much will I be able to endure?
I don’t think my personality changed during the first three weeks of recovery. Even though I asked myself the above questions every day, I knew the pain would eventually cease. But what would have happened if this was just the beginning of a chronic pain disorder, rather than the end of a successful recovery? I believe the longer someone suffers with pain, the more likely there will be changes in their personality. As a friend, or caregiver you need to be prepared to accept the changes and understand that the person you knew before the acute pain began may not be the same person you are caring for.
USING PAIN MEDICATIONS
Without getting into the intricacies of palliative medicine (pain reduction), let me say that I’ve found the fear of becoming addicted significantly outweighs the likelihood of it happening. And doctors who are palliative care experts are very adept in managing it. Although many people react differently to pain medications, here are some generalities that may help you understand it. But of course, discuss these recommendations with a physician.
1. Increasing Pain. As the pain increases, more or stronger medication is needed.
2. Subjectiveness of Pain. The widely used pain management system (numbers 1-10) is subjective. What someone says is their pain number should be accepted. The person who is not experiencing pain is not in a position of telling someone who is that they’re exaggerating. The correct pain number is what a person who is experiencing says it is. Period!
3. Keeping Pain Manageable. Don’t wait until the pain is unmanageable. There’s no place for a stiff upper lip in pain management. And current research indicates that adequate pain management positively affects healing. It’s much easier controlling pain that’s less severe. Another way of deciding whether it’s time to use medication is being aware if the pain remains at the same level or is trending up. It’s important to stop the acceleration.
4. Don’t Wait. The longer you wait in a pain cycle to begin medication, the longer it will take for it to be effective, and the more you’ll need.
5. Palliative Intervention. Think of palliative (pain) intervention not only as a way of combating pain, but also preventing it before it becomes intolerable.
DISTRACTION, NOT AWARENESS
I know many of fellow Buddhists believe that awareness and living in the present is important. Logically, that would mean that those who are in pain should focus on it to overcome it. It’s been both my personal experience and experience with patients in acute pain that the opposite is more successful. For me, it’s either playing my flutes or listening to a Brahms Sonata. For one of my patients it was the TV Soaps. For another, his pain diminished when I read to him.
Although it’s possible to go into a long discussion on the physiology of distraction, it makes more sense knowing that it works.
We don’t like thinking about acute pain. And definitely reading about it doesn’t rank very high. Yet, millions of people experience it everyday and have trouble understanding why others react to them in a way that questions the legitimacy of their feelings. Hopefully, this article will shed some light on this misunderstand area of a part of life.
A very good article to read about this issue. This helps me alot as a caregiver in greenvalley. Thank You!
You can visit Home Care Green Valley website to read out for more articles related to chronic pains, dementia and other deseases to seniors.
I’m so glad my article was helpful. Caregivers need all the help they can get.
I just stumbled upon a wonderful and comprehensive resource I’d like to share with your readers, Stan. Entitled “LIVE without Pain,” it’s from Caring Connections, with links to information on pain, pain management, medication, myths, and a “Pain Care Bill of Rights.” Find it here: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3348 ♥
Nice article Marty. Thanks
Oh yes, there is that as well.
“…the discrepancy that exists between what we think we are capable of doing, and what we can do in the presence of excruciating pain, may be unbridgeable.”
Not only is this true for physical pain but it’s also true for emotional pain. It’s one of the reasons grief support is often less effective in the first few months of grief than it is at 6, 9 or 12 months. Immediately following a death, people are just in too much pain. They’re just hanging on by their fingernails. This is also one of the reasons all of the DSM silliness to diagnose and treat depression 2 weeks following a death is so very misguided.
I agree with your comments Susan. But I think there may be some systemic problems with certain types of grief support that make it more difficult-regardless of the time period-to heal.
This was good reading to understand chronic pain, and the type of unbearable pain, like Kidney stones except that there is no foreseeable end. More like my chronic back pain that does not let up or go away! It just has manageable days, and those days where a sudden end of life experience would seem better. The uncertainty of when a set of pain meds will, or might work, to reduce the pain so I can have some type of richness of life is not an acceptable feeling. As I attended a funeral today, the reality of chronic illness and constant pain came crashing in. I then visited my Mother-in-law in a local hospital. She is going to be on Insulin injections for uncontrolled diabetic sugar levels. This May not be thought of as pain, but it is, it takes time out of the day, it changes how a person lives there life. So, therefore, it removes some of the quality of life the same as Chronic back pain does. Then, after meeting my kids after school, feeding them dinner and sitting down to watching TV, my day takes another turn… I get a sharp pain on my left backside and I then know and anticipate what will be three to four hours of intense pain from passing another kidney stone. This article says much of how I feel every day, and the actual pain scaled at ten out of ten with these every other month kidney stone attacks to add to a day of intense chronic back pain. Please read this article to understand yourself or a loved one’s dealings when it comes to intense chronic pain.
Thanks for your kind words Patrick. I think it’s hard for anyone who hasn’t suffered enduring pain to understand what a person goes through prior to it, during it, and afterwards.
I have recently had a terrible flare up of pain from the nerve damage I received as the result of having a sentinel node biopsy 3 years ago along with surgery for melanoma removed from my leg. I was so happy to read your article. I feel that I have to keep the issue of my pain to myself because people are tired of hearing about it and I sometimes feel that people think I am making it up. There seems to be this thought that pain can just be wished away and that it is the pain sufferers fault if the pain continues. Unfortunately being “in the moment” does make the pain worse. I just want to be “out of the moment” and on some sort of pain reliever. Thanks so much for expressing so many of the thoughts I have had about my own chronic pain problems.
Thanks for the kind words Mary,
I think people who dismiss the pervasive nature of pain either have never had it, or so desperately believe in a philosophy, that facts and common sense are disregarded. I think when you are at the receiving end of unskillful comments, the commnets says more about the needs of the person expressing them and anything about the person experiencing the pain.
Thanks for a great article..a great read!
Your very welcome Vickie
Thank you Stan for a great article. As a nurse working in nursing research, I work with oncology patients and am continually reassuring them that the number on the 0 to 10 scale is subjective. Somewhere along the journey of life, we learn to compare ourselves with other people and is evidenced even in asking a patient to rate their pain. They often respond in a way that tends to minimize their pain and/or how much it interrupts their daily lives, because they think of someone else who is experiencing worse pain. As professional healthcare providers, it behooves us to teach patients not only that their pain ratings are subjective and not compared to anyone else, but also to teach them some key descriptive words that serve to relay the pain they are experiencing in a more comprehensive manner.
On the other side of the coin, I still come across healthcare professionals who do not take the patient at their word. It is a continual process of educating and reminding them that the patient’s pain is whatever they say it is.
The same holds true for nonprofessional caregivers. Continually educating and reminding them that they need to take the patient at his/her word. Also very important for these folks is to tell them that they are doing a good job and that caregiving is a big responsibility. We can’t just place expectations on them and then walk away. Supporting them encouragement will go far in getting them to understand the goal – effective pain management.
Thanks Tami for your kind words.
Your observations as right on. I think there is enough misunderstanding, inappropriate expectations, and hidden agendas around the topic of pain that nobody comes out unscathed. I hope education–of professionals, caregivers, and patients–can turn things around.
…I have been living with chronic pain for a little over 20 years now which was the result of a back surgery in 1992 that left me with permanent nerve damage in my lower back, left leg, & left foot. I was told there was nothing more that could be done for me to correct this condition in any way, & was also told to just “go home & eat the pain” which I have done to the best of my ability for all those years. No one knows how much I have suffered, because my pain isn’t visible (like having a broken arm,etc., that they can see), so I’m sure many of them did not believe me that I was hurting so much & on an every day basis! And, yes, pain does change a person’s personality because of what we have to endure every day!
…thank you for your wonderful article, Stan. I am happy to say that I am managing my ongoing pain in various ways & am doing my best to stay positive, walk a lot, & am not using any painkillers at all (& have not done so for several years now), even though the same level of pain is still present. I refuse to let it completely ruin my life & just give up! I am using Quantum pendants & bracelets (made of lava rock which have 76 different minerals infused into them), & these are my only painkillers! They have greatly reduced the pain I once had to take Vicodin & other drugs for in past years.
…I apologize for the length of this message, but I do sincerely thank you for bringing up the subject of those who are in constant pain & others who doubt that they are legitimate. They will never know until they themselves have to go through it!!
Thank you for your kind words. And you’re absolutely right about people who live without pain have difficulty understanding how pain affects the life of those who live with it. Although there may be more compassion for those whose pain is visible, I’m not sure it’s that much greater than those with “invisible” pain.
Thank you for this excellent article. You speak the truth. I know from my own experience with chronic pain, which now is much better–why, I don’t really know. Pain is real. We must be compassionate and do whatever we can.
Thanks Barbara for your kind words and wisdom.
As one who’s lived with chronic pain all my life (from scoliosis, osteoarthritis, three hip replacements, one knee replacement, three spinal fusions and several other surgeries) I am deeply grateful to you for writing this, Stan. Few of us really understand what pain can do to the human spirit, unless and until we’ve experienced it personally. Thank you for shedding some light on the matter! ♥
Thanks Marty for your kind words. And you’re absolutely right that people who have never experienced excruciating pain over a long period of time can’t understand how transformative (not always positive) it is.
This article in the June 2012 issue of Lancet gives me some hope: “Pain Control–A Basic Kindness,” http://j.mp/KA0Cpn
Thank you Dr. Goldberg for a very truthful insight into ‘pain’, especially for those of us that experience it on a chronic basis.
I have never read a more understanding paper on what pain people experience before and I’ve been a Registered Nurse for 32 years!
I have mixed connective tissue disease which consists of vasculitis (giant cell arteritis), systemic sclerosis, and lupus. While my dear father’s unexpected death 2 yrs ago was a ‘trigger’ for my disease flare-up, it certainly is not psychological pain that I experience more. I even started back to counseling as an avenue I hoped would help. It helped with everything but the real pain.
I appreciate all you do for others and I really believe we as caregivers have to experience some pain for ourselves to better help our patients/family/friends, I don’t necessarily think it makes us a “better person”.
God Bless You, and thank you.
Thanks Kenny for your kind words and wisdom. I’m always amazed when I hear people being critical of how those in pain act “differently,” which is usually framed as not sensitive, caring, etc. Unless it is experienced, critics have no idea of how invasive it can be.
Wow, great stuff. So practical and applicable. This is a cover story!
Feel free to use the article in any way you wish. I think it will resonate with your readers.