Says Who??

Verstehen, through shared perspectives


2 Comments

I ALMOST WISHED I HAD DIED

lighthouse in storm

One of the major adjustments I have had to make as a retired Sociology professor is no longer having a captive audience for my carefully considered observations of American society: The problems and the joys. I do love writing this blog, which does not require the same degree of objectivity, but let’s face it. I am no Dan Rather (whose daily contributions to Facebook I look forward to reading). Thanks to social media, I am but one tiny voice buried in the cloud of articles hourly produced by everyone with a computer, cell phone or camcorder and an opinion to share. So, to be perfectly clear, I am writing today not to be read, or “heard,” or even to keep in touch with the world. I write today because I must. For me.

I do my best thinking when I write. This blog is for me, but if you want to read it, challenge it, agree with it, or ignore it…just feel free. But do not think that I am trying to take on the world. I no longer have that kind of energy. I just want to try to get all that I have internalized about our social environment outside of my head and heart. I am in sensory overload from being bombarded with angry, hurting, hating, yelling, profane, lying, manipulative messages from the world outside my apartment.

As I write this, I have received 13 emails already that are unsolicited ads for things I don’t want, don’t need, or don’t agree with. I am a registered Independent, so both Republicans and Democrats feel free to email and/or call me with requests for financial and electoral support. I am so very grateful for those quiet, caring people who are all around me when I turn off the tv, the computer and the radio and get out and share time with them. I don’t answer the phone if I don’t recognize who is calling, and I don’t open any mail not from family or friends (or bills I know I owe). When it all gets to be too much, I listen to my classical piano CDs, or drive down to the river and just sit in the quiet, now cool afternoon and breathe fresh air.

Many of my friends no longer really want to talk about politics. Life is so full and rich, relationships thrive and laughter once again seems normal, when I am with my neighbors and friends. So long as we don’t talk about politics.

Yes, there are pressing issues that must be addressed, must be advocated for. Babies in cages. Chronic pain patients losing their pain medications, physicians and pharmacists being threatened. Members of all three groups committing suicide at ever higher rates. Private prisons being filled with drug users who could become productive citizens again with the right treatment, but whose prison terms will leave them right back where they began and worse. Families, communities and organizations being divided by political differences. More problems than any one person or organization can possibly resolve. More finances needed to be directed toward rebuilding communities devastated by nature. It seems overwhelming. I can’t address all the things I am deeply concerned about, and I feel frustrated and guilty for neglecting the ones I can’t get to.

Yet deep in my soul there is a calm, quiet place in the midst of this storm. A place where I know that all is not lost. That there are wonderful people in my world, and in the greater world in general. People who value honesty, integrity, caring, and excellence, the beauty of the gift of our natural world, and the shared intimacy with a loved one in a monogamous relationship. People who know that we cannot be truly human without being part of a community that works, plays, and worships together. People who accept me as I am, and who are in turn accepted by me as they are.

That is the beauty I see in my world, and it is more important to me and to my well-being than money or status. Because I live in a community where this beauty shines brighter than all the noise of the media and the political world, I regain my will to live on a daily basis. Once again, I can accept that I can only fight these battles on one front at a time, and trust that others will work where they are best suited to deal with other battles.

God did not bring us this far to abandon us. Today, I was tempted to say that I wished I had died five years ago, when undertreated chronic pain had brought me so near to that end. Then, I would not have had to see the devastation being brought about in my country. But I cannot wish that. These five years have been a great gift, and I have gotten to meet and work with people whose willingness to make a difference…no, not just willingness. Determination. Whose determination to make a difference to those who are being marginalized, stigmatized, pushed aside and left to die is greater than any I have seen in this country in my nearly 78 years. Policies we have lost by reversal in the last two years cannot compare to what we are gaining in finding the deepest good within ourselves and our families, friends and neighbors. In our communities and states. Soon, hopefully, in our nation once again.

Yes, it is hard and frustrating. But we come from good stock from all over the world. Our ancestors knew worse times and better times than these, but they persevered. We know that, because we are here. The way ahead is in our DNA: not in specifics, but in inner strength and outer relationships.

I am so glad I lived to see it begin.


Leave a comment

WHY JOIN A PAIN SUPPORT GROUP?

I know, I have heard it before: “I feel bad enough already. Why would I go somewhere just to sit and listen to other people complain about their pain?” A few years ago, I would have asked the same question. Now, fortunately for me, I belong to a support group for people with chronic pain and I can list reasons why I am grateful for the blessing of belonging.
Painchangespeople
First of all, after 8 monthly meetings I have attended, I have found a group where I do not feel like an outsider. When I have sat in a chair as long as I can, I just stand up and move around. Everyone understands, and some of them do the same thing. If I am ever too overwhelmed with living a life in pain and don’t feel like going out, I am understood and comforted by my group friends.

No one tells me “You don’t look sick/pained” or suggests that I am just looking for attention. In fact, if I do need attention in a meeting, all I have to do is ask for it and explain. No one complains that I took a handicapped parking space when I “obviously” don’t need it. No one tells me to “just get over it, move on with your life.” No one rolls their eyes when I groan, getting out of my chair. You know what I am talking about. In fact, several other insults to your efforts to live something akin to a normal life probably roll right off your tongue as you read this.

Other reasons to belong to a Chronic Pain Support Group include:

*Sharing experiences of successful and unsuccessful methods to manage pain.

*Sharing new pain management techniques and medications, and information about pain management physicians when someone has lost their pain doc.

*Sharing resources like who to follow on social media for the best information regarding debates in pain management, etc., and articles that help us keep up with and understand this controversial and complicated field of medicine.

*Learning from physicians, psychologists and other professionals in pain care about new legislation, new research, and alternative pain management methods, in detail. (At special meetings, not every meeting)

*Having a group of people I can ask for information or prayer or good thoughts when something difficult for me comes up between meetings.

*Hearing about advocacy groups that members may also belong to, and what successes they are having, or special drives they are conducting.

*Being able to bring a friend or caretaker along to share the experience and knowledge with me, or to assist me.

*Knowing that confidentiality is observed faithfully, and what is said in meetings stays in the meeting.

*Knowing that I will not be expected to do what I can’t or don’t wish to do, without losing the respect and support of the group.

*I am doing something positive for myself, and working to break the chains of pain in my life. And I am not alone.

I am sure that with the passing of time and our growing together in caring and in knowledge, more reasons will be added to this list. Meanwhile, no discussion of reasons to join a support group would be complete without access to the article written about our group by our recent speaker and supporter, Dr. James P. Murphy:

A Letter in Support of a Support Group

BTW, our next meeting will be Wednesday, September 12th. 4:00 to 5:30 pm. Dr. Murphy’s article has further details on where, etc. Please join us!

grand canyon


2 Comments

IT WAS AN EPIPHANY

 

Derived from the Greek word epiphaneia, epiphany means “appearance,” or “manifestation.” In literary terms, an epiphany is that moment in the story where a character achieves realization, awareness, or a feeling of knowledge, after which events are seen through the prism of this new light….*

 dreamer

 

If you have read any of these posts in the past, or followed me on social media sites, the topic of this blog undoubtedly presents as a drastic departure from my usual chronic pain patient advocacy, and even more so from my general political observations. In fact, perhaps it seems too esoteric for a sociologist to even think about, much less write a public blog on the topic.   Psychology, chronic pain, and the mind-body connection nevertheless are all familiar territory in pain management literature, and the numbers of really good approaches to these problems are legion.   Yet their true value becomes lost in the fog of the inevitable watered-down versions that we end up producing in our collective need to simplify the complex and package it for quick sale. Epiphany, as a necessary element of both healing and evolving human processes, is a concept that while accepted as part of the break-through of successful science as well as of evolving spirituality, is not often explored for its own sake.  Whether it becomes part of the pain management lexicon, I can only pray that it does not do so at the cost of its complexity and authenticity.

To be clear, I have had little choice in accepting the reality of epiphany as a healing event. What you will read, if you continue here, is the process that I have experienced, and which I now believe vital to the understanding and proper management of chronic pain (both physical and emotional, which seem to be deeply intertwined). That was definitely not the position I would have taken as recently as a year ago. In fact, this is pretty deep stuff for me to think about, much less write about. I am not trying to drown myself or the reader in the depths of this topic, or in the murky waters of my own, very long, life which has been accompanied all the way by pain in various manifestations. My recent personal epiphany has led me to first accept, then to firmly believe, that the mind-body connection cannot be ruled out as an invaluable—even necessary—prerequisite for understanding the role of chronic pain in the lives of many patients. And that it may necessarily include the experience of an epiphany of some kind.

I believe the psychologist’s role in mending the mind-body connection is vital to wholeness for the chronic pain patient whether the pain is barely managed, or has been controlled “enough to cope.” Does that make sense? I inquired of my favorite pain management physician. “Yes it does,” he promptly replied. But even now as I begin to dive into the narrative explanation of my experience, I strongly resist the idea of any psychological protocol that has been watered down into a one-size-fits-all process for pain management. It would be no more useful than a one-pain-medication protocol would be suitable for every patient. Chronic pain patients are unique individuals worth the time and effort spent, working with the cooperation of the patient, to achieve the wholeness and productivity uniquely suited to that individual—spiritually, emotionally, and physically.

So, getting to the point, an epiphany can be all that we commonly accept as a liminal** moment in time when we stand in the dangerous threshold places that are holy, or liminal.  It can also be simply a flash of understanding that may change the way we look at things, or simply allow us to move on in a very this-worldly fashion, without much in the way of miracles to play a part in the proceedings. Or, it may heal a broken spirit and allow normal light to return to a life. This was my recent experience of epiphany.

I would never have called it an epiphany, yet it is due to the wisdom and patience of my psychologist that the spiritual and psychological environment for this very liminal event could ever even have taken place. To clarify, my psychologist is not a pain management therapist, nor is he associated with any pain management  group,  but I was referred to him because of my pain.  Through two years of working together with him on the mind-body connections of my chronic pain, it was becoming more and more clear to me that I often described myself as “who I was” (in survivalist mode) during periods of physical and emotional abuse; and “who I was” after having removed myself from all connections to those times.

During about a decade immediately following the achievement of my freedom, my anger was so deep—almost primal—that I acted on that anger and the cynicism associated with it most of the time. Until I could no longer live like that. From somewhere, I found my survival depended more on having a better understanding of my worth as a human being than to accept that version of the “new me.” The behavior ended, but the anger remained and deepened. And I hated it. And sometimes, myself.

But the anger was also motivating. I went to University in my 40’s, received my PhD, lived in South Africa for seven years, and came back to the States “a different person.” So I described myself, anyway. The anger was still with me, like a two-ton vehicle attached to my back. I thought of it as the vehicle that kept me alive, that got me where I needed to be. But actually, I carried the “vehicle.” And it was heavy, and it caused me a great deal of physical and emotional pain. The pain alone finally nearly destroyed me, and at the age of 72 I finally gave up on life, death seemingly imminent. I had the satisfaction, I thought, of having overcome the person I had been, to achieving something in life that had real meaning to me. I no longer behaved as “that other woman” behaved, but still there was the pain. Still, there was the anger.

Anger at God? Probably, but more like confusion. How could the God I had experienced as a real and positive presence in my life since childhood be the same God that allowed me to be abused and violated, to suffer deep and painful losses right up to that very year I retired—how could that be the same God to Whom I could honestly give the credit for “leading me all the way?”   For that matter, how could the person I am now be the person I was then? I would never discuss her, or even think about her if I could help it. That part of my life was more and more a void. I hated who she had BEEN, and felt relieved that I had “left her behind.” Except, of course, for the pain. Except for the anger.

By now, my therapist had earned my complete trust and with deep respect for my privacy, had still managed to elicit some valuable understanding of who I thought I used to be, and why. Then came the day of The Epiphany. I had been listening to “Jesus led me all the way” in the car on the way to the session, and my newfound road to freedom from deep angers was being threatened. My psychologist must have sensed the time had come, because in our subsequent conversation my confusion about how God could have been leading me in those dark, anger-filled years finally made sense. Don’t get me wrong. I made the decisions, and I alone used the anger from previous helplessness to get me through some situations I probably didn’t need to be in, in the first place. I don’t claim God made me suffer, but at that specific moment I saw that He used my suffering, my bitterness, and my losses to lead me to a better place. That was how He led me “all the way.”

Hard on the heels of that epiphany came the certainty that the new understanding being true, every experience, every “version” of who I was at different times of my life, thus were all about the same, ongoing story about the same, greatly blessed (and yes, greatly misused) human being. Paradoxically, the person that I denied as part of myself has shown me how much I need her cooperation in order to continue to follow a purposeful life; how much I need her forgiveness in order to forgive those who hurt me; how much I need her experience of the worst in human beings in order to try to make some sense of the world we live in today and avoid giving up in despair.

I call that a real epiphany. Both the dangerous, liminal kind, and the blessed, healing kind.

In common usage, it has been my understanding that an epiphany is an “Aha!” moment at the very least; more likely a “Eureka!” moment, in which (to borrow from James Joyce) the radiant object becomes a surreal, even a sacred thing (or idea, or experience). In religious terms we might think of Saul of Tarsus being blinded by the Epiphany (of the manifestation of Jesus), after which he, his life and his purpose were completely changed. We think of him bathed in the magnificent presence of the Christ during that moment too radiant for mere mortal eyes to bear. For some, the idea of epiphany embodies that sacredness and is not expected to happen to ordinary folk like you and me.

For most of us, we may think of an epiphany in the terms of “Aha” or “Eureka,” but still as something contained within the ordinary living of our day to day lives. We are not blinded, our lives may shift a bit one way or another, but we continue to use our same names and, while some changes in our lives or lifestyles may occur, we remain essentially who we were. We struggle for hours, even days, with a problem we just can’t get our minds around. Suddenly something clicks in our minds and everything falls into place. The answer is obvious. We have experienced an epiphany, and it was a good thing. It was a positive occurrence, after which we might say “Why did I not see that before?” The implication being that we discovered it ourselves, it was not given by divine intervention, did not occur at a liminal threshhold. Or did it?

And, finally, do I now need to spend time trying to understand the unexplainable, or would it be more useful to incorporate the results of that experience into a life that has achieved continuity, meaning, and potential as a whole tapestry? A tapestry that reveals both beauty and ugliness, both mystery and clear understanding, both light and dark. A tapestry as yet unfinished, in which the ongoing presence of the Weaver may continue His work.

Looking at that tapestry, I can only believe: The Best is Yet to come.

Thanks for listening.

 

 

NOTES:

*https://literarydevices.net/epiphany

 **Liminal: a psychological, neurological, or metaphysical subjective, conscious state of being on the “threshold” of or between two different existential planes, as defined in neurological psychology (a “liminal state”) and in the anthropological theories of ritual. www.askdefine.com

 

DEDICATED WITH LOVE TO THOSE WHO SHARE THE EXPERIENCE OF

 CHRONIC PAIN;

TO THOSE WHO AS FAMILY AND FRIENDS

HAVE WALKED WITH ME IN JOY AND IN PAIN;

AND

ESPECIALLY TO

JAMES PATRICK MURPHY, MD

AND

DENNIS E. WAGNER, Ed.D,

WHO SEE AND TREAT ME AS AN INDIVIDUAL PATIENT,

WITH THE RIGHT TO MY UNIQUE EXPERIENCE OF PAIN.

AND FINALLY AND FOREVER,

TO HE WHO “LED ME, ALL THE WAY.”

 

hands, heart


4 Comments

BREAKING THE CYCLE OF PAIN: THE CHRONIC PAIN SUPPORT GROUP

cpsg flyer 4.11                  Last year, as you might have read in previous blogs, I worked in a Pain Management Center. My favorite times at the Center were when I was calling the patients between their appointments, to make sure they were doing OK and find out if there was anything they needed from us before their next appointment. Some were not doing well for various life experience reasons and needed an earlier appointment. Others were having trouble with obtaining their medications from their pharmacy and needed us to work with them to locate a more reliable place to obtain their medications. Still others had questions about various issues of living with chronic pain in a less than supportive political environment and a health insurance economy that does not guarantee that a patient will be able to afford the medication that they need.

But the patients that stay in my heart the most are those who lived alone, those who were themselves their only caretakers, and those who struggled the most with their pain. Their misery resulted from the entire gamut of problems from cancer to rheumatoid arthritis, from low back pain to pain in every joint in their bodies, and more. But that was only the pain. There was, added to this insult to the body and mind, the trauma to the soul. I heard how they were not believed when they tried to relate their stories; how no one wanted to listen to how they felt because “They heard it so many times already.” I heard how they missed doing the things we all took for granted, such as; going out to eat or to a party or a concert, cleaning their homes the way they liked for them to be, or working full time and earning a living that included enough money to pay for the extra needs in life. Even worse was the fear associated with brain fog and confusion and the ultimate threat of not being able to stay in their own homes. The increasing loss of choices in their lives was worst of all.

I, of course, could relate. This week I read an article from KevinMD, entitled “Seven Reasons Why Being in Pain is a Pain,” by Franklin Warsh, MD, MPH. It was not so much an eye-opener for me as it was a message to my soul. Here, finally, I heard a medical professional unburden himself of the true awfulness of chronic pain, how it takes over every facet of one’s life, and how it makes the patient fight for every ounce of joy they may be able to experience. Some of what he said echoed the voices of patients who had shared their stories with me. Much of what he said was also about things I knew our Pain Center patients would not necessarily voice to anyone. Some were things I also often experience, but would never tell anyone because I was not sure they were not the result of some flaw of my own—some insufficiency of my DNA, or my character, or my failure to be a better person in some way. Dr. Warsh was able to take the shame out of chronic pain. By sharing (naming) the common symptoms and losses accompanying chronic pain, he defused the stigma we assign to ourselves for having pain.

I am not saying everyone suffers all of these things he mentions, because all chronic pain patients are unique in their experience of pain, their response to pain, and what works for them to ease that pain. Some can take medications with a lot of success; others cannot tolerate medications and have to seek other means to alleviate their pain. And there are many other ways—ways that, like medication, may be more or less effective for any given patient. But that extended discussion is for another blog. This blog post is about a means of dealing with chronic pain that I believe to be one of the most important, based on my own experience and the experiences that of some of our patients have related to me. The experience is that of  Joining a chronic pain support group.

Recently some of my professional friends and I agreed that a Pain Support Group that was open to all chronic pain patients was a necessity for our area. We decided it should be free to the public, approved by relevant medical and psychological professionals, and not intended for political advocacy but rather would be a community of accepting, active listeners who are willing to care for one another and meet together for learning and sharing. That group has begun to take shape, and the next meeting will be on April 11th of 2018 at 4:00 pm. We meet in St. Paul’s Episcopal Church Education Wing at the corner of Market and Walnut Streets in Jeffersonville IN.

This group is intentionally meant to be a means of healing through our sharing, rather than advocacy. We are definitely not opposed to advocacy and know that it has its own role in healing. But it is often difficult for people in severe pain to commit themselves to such active work. As one patient has said very poignantly, “Why, when I finally have something I really need and want to advocate for, am I least able to do it?” On the other hand, if you already belong to an advocacy group and would like to join us as well, you would be very welcome.

I have the privilege of being the facilitator, or moderator, of this group. My professional life as a nurse/sociologist has been based on working with groups to facilitate the process or goals of the specific group. We do not work on what my personal agenda might be, but what we all agree we want the agenda to be. The caveats I have mentioned above concerning advocacy and sharing are the basics agreed upon by the professionals who participated in our discussions when we formulated the group, along with the co-pastors of the church who have donated the space for us to meet each month. From that opening point, we worked together to create the process of finding healing within ourselves and each other.

The links for the article by Dr. Warsh, as well as an article written by Dr. James P. Murphy about the group, are below. I invite you to read them and to think about what we might be able to accomplish together for and with others, and please meet with us on April 11th or any second Wednesday of the month at St. Paul’s. We need you, and if you are seriously considering this, you probably need us.

      breaking cycle of pain

 The Family of Pain is a Club Nobody wants to join, 

But Isolation is Worse.   –Lynn Webster, MD

  

Resources

Murphy, James P. “A Letter in Support of a Support Group” March 25, 2018 https://jamespmurphymd.com/2018/03/25/a-letter-in-support-of-a-support-group/

Warsh, Franklin “Seven Reasons Why Being in Pain is a Pain” in KevinMD, Dec. 27, 2017 https://www.kevinmd.com/blog/2017/12/7-reasons-pain-pain.html

Webster, Lynn “Family of Pain is a Club Nobody Wants to Join, but Isolation is Worse.” http://thepainfultruthbook.com/2018/03/family-of-pain/

 


Leave a comment

CHRONIC PAIN PATIENTS: MYTHS, LIES, AND REALITIES

On March 4, 2018, the following statements were used as discussion points for a group of interested members in our church. It is posted here for that group to refer back to; to use as points for further research and discussion; and for the use of concerned others who care about Chronic Pain Patients and their caregivers.

DEFINING CHRONIC PAIN

  • Persistent/recurring pain lasting more than three months

 

DESCRIBING PAIN

  • Aching, burning, sharp, pulsating/throbbing, radiating, self-limited, recurring, persistent, dull, “itching,” are a few common descriptive terms.
  • The “Scale of 0-10”  Problem: The only true comparison is the patient’s and physician’s knowledge of past responses from that patient only: How particular levels felt previously to the patient, how the patient described the previous situation to the physician. My pain level of 7 may be much less disabling than another patient’s perception of 7 level pain. EVERY PATIENT IS UNIQUE IN THEIR PERCEPTION OF PAIN, THEIR EXPERIENCE OF PAIN, AND THEIR ABILITY TO COPE WITH PAIN.
  • True patient, or drug seeker? Evidence of injury is not a guarantee of pain after 3 months; lack of evidence of injury in the chronic pain patient is not proof that there is no pain . (See above)

 

CHRONIC PAIN MYTHS

  • Chronic Pain Patients are the cause of the Opioid Crisis.
  • Doctors are the cause of the Opioid Crisis.
  • Anyone who takes opioids for chronic pain will become addicted to them.
  • The withdrawal symptoms that patients have if suddenly stopping opioid medications are proof of addiction.
  • People who take care with their appearance, go to work regularly and do not complain of pain or show any evidence of disability while at work do not have chronic pain. Common remark: “You don’t look sick.”
  • People who have handicapped permits, park in a handicapped space, step from their car and walk—apparently normally—into the store are scamming the system. They are not disabled.
  • They can’t possibly be in serious pain and bedridden one day, and out running errands the next day. Pain is just an excuse for ______________ (fill in the blank: laziness, neediness, excuses for not taking responsibility for their lives, etc.)

 

LIES about Chronic Pain Patients

  • Prescription opioids are the cause of 95% of overdoses and overdose deaths.
  • They are pretending to have pain—attention seekers, drug seekers, etc.
  • It is all in their heads. They have serious psychological problems.
  • The withdrawal symptoms that patients have if suddenly stopping opioid medications are proof of addiction. (May be a myth and not a lie, depending on why it is believed)
  • It is OK to take them off opioids and tell them to take Tylenol; their pain does not require opioid therapy.
  • Chronic pain patients are in the same category as substance abusers and should be punished accordingly.
  • Chronic pain patients sell their drugs, and/or give them to addicted family members and friends.
  • The patient must be discouraged from thinking about or talking about pain.  If they would just think positively and stay busy, the pain will go away.

 

THE REALITIES

  • The War on Drugs has created an environment where it is more truthfully a War on Pain Patients and their Physicians, and both groups are dying at alarming rates.
  • The Pain Patient is essentially alone with their pain. Either people are tired of hearing about it, or don’t believe it, or they are angry proponents of a political ideology about it. The pain itself cannot be seen or felt by others, or proven to be real and just as bad as the patient says it is. Meds are hard to get, hard to pay for, and many may have disabling side effects. The patient (and often their caregiver and physician, are stigmatized, facing myths and lies about their condition and a hostile environment.
  • Some states and communities have adopted an enlightened understanding of the nature of substance abuse. Funds are being allocated for humane and realistic treatment instead of punishment; safe and effective treatments are more widely accepted than in years past. BUT NOTHING IS BEING DONE FOR CHRONIC PAIN PATIENTS!!!

 


1 Comment

JUST ANOTHER CHRONIC PAIN PATIENT

“Me, too!”  We can all find ways to join with others who share the significant abuse, pain, loneliness, poverty…..whatever has touched us with enough significance to change the way we conduct our lives.  Our thoughts.  Our treatment of others.  Our understanding of our own worthiness, or the lack thereof.  The reality of our life that will either make us, or break us, through no fault of our own.  For over 100 million people in America, that reality is ongoing.  For some it has just begun, for others it has been the story of a lifetime of pain, and of trying to cope.  These are the chronic pain patients, and I am here to say, “Me, too.”

Elsewhere on this website I have talked about the devastating pain, and the 45-plus years I have lived with it.  About how I could not take pain medications other than NSAIDs, which ultimately caused more problems to be dealt with.  About how almost 4 years ago I went to a Pain Management physician, who made it possible for me to return from the nights spent crying in pain and helplessness, wishing for death, to a productive life once again.  Yes, along with many who have committed suicide or considered it since the War on Physicians and Pain Patients, I can say “Me, too.”  Although I cannot consider suicide (and this is no credit to me,  it is just a fact), I have certainly prayed for death to take me out of the intolerable situation.  As I said, I have written about this before.  It’s all still on line, if you need to read it.

But that is not why I write now.  There is a deeper reality to being a chronic pain patient in America, one that is emotional and psychological, and causes a pain of the inner being that is every bit as devastating as a pain level of 10 on a scale of 1 to 10.  It is why the title of this piece is “Just Another Chronic Pain Patient.”

To our government, to many insurance companies, to law enforcement and even to some medical associations and physicians, nurses and practitioners, and even to our own employers, our families, our churches and our friends, we do not exist.  When we must leave the house, we dress as well as possible, use makeup, and try to appear as though nothing is wrong with us because no one wants to hear or be reminded about our constant struggle.  It isn’t a welcome contribution to our daily interactions.  Worse, we often hear:

It’s all in your head.  See a therapist, not a doctor.

You would feel better if you would just get out and do more; exercise more; volunteer more.

Quit feeling sorry for yourself and look around you.  You are better off than most people.

If it wasn’t for you and your kind, we would not have this opioid crisis.  It all began with you drug seekers.

And these are only a few of the arrows that pierce our very souls.  Like when we are not even mentioned in discussions of how pain medication should be used.  It is all about the people with substance abuse problems, or acute, short-term pain.  These are considered legitimate issues, worthy of concern and assistance.  And they certainly are all of that, but Chronic pain does not exist, is not even worthy of notice.

Nothing is said about the courage and strength of the single mom with children to support, who bravely goes to work every day looking her best, with a big smile on her face, hiding the pain that racks her body to the point that she cannot eat properly, or sleep well at night.  And she won’t talk about it, because she knows she could lose her job, or her children, or the medications a concerned and knowledgeable physician gives her so that she can go to work and care for her children.  She lives with the fear, as well as the pain.  Every day.

Speaking of every day, other patients are condemned because they may have periods of hours or even days of less pain, when they can get a lot done, and enjoy some time free of the pain.  Those times come at a high price:  when they can no longer operate at that level of freedom, they are under suspicion of malingering.  “S/he only hurts when it suits her/him.  They just want attention/pills/time off from work..” Whatever character flaw the speaker is convinced the pain patient suffers from becomes a reality for the speaker, and the consequences of their words become, by extension, a reality for the pain patient and the source of increased feelings of worthlessness, even evil. Oh, the word evil is not spoken.  But add up all the negativity, the character flaws identified by those who have little compassion to spare for the pain patient, and to the pain patient, it feels as though others see you as something evil, at worst.  Maybe only as something unworthy of compassion and a helping hand, at best.

Is it any wonder that some of us have not been able to continue living in the face of having medications taken from us, on top of the horrible feelings engendered by knowing what society thinks of us?  Is it any wonder that not many have been able to speak out and say “Me, too?”

No, I am not asking for credit for doing this.  I am just praying that if you know a chronic pain patient that you will give a second thought about the stereotypical comments that come to mind.  I don’t presume to say that all patients feel the same way that I feel, or to the same degree.  But the same thing is true about chronic pain.  Our lives are different, and we cope the best we can with the degree of pain and rejection that we suffer.  To that, we can all say “Me, too.”

In truth, there is no such thing as “Just another chronic pain patient.” 

 

 

 

 

 

 

 

 

 

 


9 Comments

AN URGENT PLEA TO END THE WAR AGAINST PHYSICIANS AND PATIENTS

UPDATE 12/5/17:  A revised (shorter)version of this blog has been posted in KevinMD, at the following location.  Thanks, KevinMD!

https://www.kevinmd.com/blog/2017/12/stop-opioid-crisis-war-physicians-must-end.html

 

 

Crimes against humanity are widespread on this planet, and too many to count.  Over the past decade diligent researchers (by diligent I mean those who verify sources and results) have uncovered the roots of some of our more persistent and frightening social problems, and published reputable accounts thereof.  Many such problems are actually the result of conspiracies set decades ago, like the rise of private prisons for the purpose of incarcerating a specific race of young people because of socioeconomic issues (read racism), and calling it a War Against Drugs.  But the drugs continued to take over our nation—not just because of those young people, but because of the greed for money and power in the pharmaceutical companies, insurance companies, and politicians that has grown exponentially, unchecked.  Nixon’s intended outcome—that of getting minorities off the streets and severely impacting their ability to live normal lives outside of prison—also suited well the baser needs of other groups in our society.

Other groups, in fact, began to see the financial success and knowledge of physicians to be a major threat to their own greedy plans.  They deduced that chronic pain patients, now acknowledged and receiving treatment for their pain, could be both blamed as a source of street drugs and used to help bring down honest physicians (and to support the pill mill “doctors” who supplied the patients with enough medicine  to both use and sell).  Eventually, we begin to see “statistical reports” that “prescription drugs” were the cause of abuse and overdose deaths in specific regions of our country.   For a short time, they may have been.  But when the deaths began to occur in White Middle-Class families, the outcry to increase the efforts of the War on Drugs became deafening.  There had to appear to be some effort to control the drugs, so we see draconian measures being set—in some states by law, in others by regulation—that were targeting the legitimate physicians who prescribed for pain patients, and ultimately the patients who were frequently cut off without warning from their pain treatment.  Despite the outcry against punishing patients and physicians, and the evidence showing the futility of this approach to the War on Drugs, this situation continues to threaten the lives of both patients and their physicians, every day.

Despite scientific proof that Substance Abuse Disorder (being addicted to a substance) is an illness of the brain and can usually be well managed by an addiction specialist, legislators and law enforcement officials alike still only see “drunks and addicts” and still, after DECADES of failure, claim that incarceration/punishment is the only way to fight the war on drugs.

Despite, also, the logic that if you are fighting a War against a crime, you go after the source rather than innocent bystanders.  If we don’t get rid of the sources:  drug cartels, the dealers, and the creators of the drug,  how much good is it going to do to punish the people who use them?  Sadly, these sources have never been the primary targets.  Just as now we see heroin and fentanyl actually being the greater cause of overdose deaths (because they are cheap and much more potent than earlier versions), we still hear and see stories about prescription drugs being the cause of these deaths.  We are still subjected to so-called charts describing dubious statistical proof that prescription drugs are the main cause of overdoses, when more reliable research shows that it is street heroin and fentanyl.

To that, I would ask the reader to please follow the hyperlink below.  The author of this piece has provided a thoughtful and well researched discussion of what is really causing overdose deaths, and why the propaganda we are getting is so dishonest:

https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935

Having read this article, consider well the facts that every year more than 400 physicians commit suicide;  that thousands of chronic pain patients suddenly deprived of their medication have either committed suicide or gone to the streets to get their medication; and that many of these have also suffered unintended overdose deaths.

These measures that make practicing good medicine so difficult, and the law enforcement mentality that believes physicians are guilty until proven innocent,  are not the only reasons physicians are either opting out of practicing medicine, or opting out of life altogether.  The War on Physicians and on Patients is real, and it is devastating.  The pharmaceutical houses and insurance companies may actually believe that we can survive without trained doctors; Artificial Intelligence will be just as good if not better, they believe….but check out this article:

https://www.scientificamerican.com/article/the-social-life-of-opioids/.

We read here that there is well-researched, scientific proof that a caring and trusting relationship between patient and doctor is a necessary, (but not sufficient), ingredient for best medical practice—AND for healing!  As one incredible physician has noted:  “They (the patients) don’t care how much you know until they know how much you care.”  Artificial intelligence hasn’t managed the caring part, and even if it does I don’t see much healing effect to be expected from a robotic hug.

The crime against pain patients who are now not only being vilified in news media, in pharmacies, and in social media, is certainly heartbreaking.  If you happen to be one of those pain patients, it is also a return to the terrors of intractable pain, inability to function productively in society, and a potentially horrible death.

If you are a physician who has spent at least half the normal human life span studying and preparing to make life better for those who suffer, life may be  becoming a nightmare.  Insurance companies dictate what treatments are allowable, how often, and how long such treatments will be permitted.  They do not refer to medical societies for their information.  They refer to bottom line profit indexes.  Legislators who pass laws (when medical board regulations would more properly suffice) that limit what physicians can prescribe, and how often—arrange that physician’s offices and lives will be disrupted, the physicians in question treated as guilty before having a chance to be proven innocent.  As usual, those who are charged with the felonies that have been put in place as a weapon in the War on Drugs never quite regain their previous status of innocence, even when proven so.

Does it matter to the insurance companies or the legislators that these laws have only created chaos and confusion, betrayal and mistrust?  Does it matter that physicians are already reeling from finding themselves backed into corners where they have to “sign on” to corporate health care entities that are run by non-medical administrators who decree when and how often they work, how many patients they will see for how long, and determine bonuses based on computer-run quotas and outcomes?  Does it matter that medical students are so disillusioned that they drop out, and that some commit suicide?

And finally, adding to the fears of losing their practices, their licenses, and the meaning attached to their life work, physicians in increasing numbers are being attacked and/or killed by frustrated, angry patients or their relatives.

Why is this ethically, morally, and even logically wrong approach to our drug crisis—which MUST be separated in our minds from medical care for chronic pain patients—continuing to exist as a modus operandi?  Why are physicians who serve our communities targeted as criminals at worst, and problem employees who must be managed at best?  Sociologically, physicians have historically belonged to one of the highest prestige vocations in America.  Their demotion to the present state is not through fault of their own, but through others’ sociopathic greed for money and power, combined with the attitude that allows so many to hate anyone who differs from themselves, to create this totally inhumane situation.

It is not “liberal” or “progressive” to respect and care for others.  It is Christian, and Muslim, and Hindi, and Jewish—it is a basic precept of many world religions and predates organized religion itself by centuries.  Of course, being human and egocentric, we do not always succeed in living up to these standards.

It is my opinion that the proof of our own individual humanity is the maturity, intelligence and self-motivation to care for others as we care for ourselves.

I could go on for pages about why so many people have lost the human characteristic of empathy, but there are enough people who retain it who could help our country become human again.  Who still respect the dignity of other human life, and who realize that “together, we stand; divided, we fall.”

It is definitely in our best interests to respect and protect the lives and experience of our physicians; it is also in our best interests not to stand by and leave them or their patients to live and die in misery when it is all so unnecessary.  And inhuman.

And, a last plea……

 

 

RESOURCES:

Alexander, Michelle.  The New Jim Crow:  Mass Incarceration in the Age of Colorblindness.  2012.  The New Press, NY

Bertram, Eva and Morrris Blachman. Drug War Politics: The Price of Denial.  1996. University of California Press.

Bateman, Dustin.  Neurobiological & Sociological Aspects of Addiction

Levinthal, Charles F.  Messengers of Paradise.  Opiates and the Brain.  The Struggle Over Pain, Rage, Uncertainty and Addiction. 

Meier, Barry.  A World of Hurt:  Fixing Pain Medicine’s Biggest Mistake.  2013.  New York Times Company.

Parsons, Talcott.  “Illness and the Role of the Physician:  A Sociological Perspective.”  American Journal of Orthopsychiatry 24 March 2010.  Copyright © 2010, John Wiley and Sons.

Quinones, Sam.  Dreamland:  The True Tale of America’s Opiate Epidemic.  2015.  Bloomsbury Publishing Plc.

Sternheimer, Karen.  Connecting Social Problems and Popular Culture:   Why Media is not the Answer. 2nd Ed.  2013.  Westview Press, Perseus Books Group.

Webster, Lynn R.  The Painful Truth:  What Chronic Pain is Really Like and What it Means to Each of Us.  2015.  Webster Media LLC, PO Box 581113, Salt Lake City UT 84158.

WEB ARTICLES, including peer reviewed

Pain Medicine News – How Did We Get Here? http://www.painmedicinenews.com/ViewArticle.aspx?d=Guest%2BEditorial&d_id=351&i=March+2014&i_id=1042&a_id=26043&tab=MostEmailed#.U3PLVV6vdyI.twitter

Report: Chronic, Undertreated Pain Affects 116 Million Americans http://ti.me/AAfT7q  via @TIMEHealth

New Pain Management Rules Leave Patients Hurting http://seattletimes.com/html/localnews/2016035307_pain28m.html#.U2mA77bwJzQ.twitter

Chronic Undertreated pain affects 116 million Americans: http://healthland.time.com/2011/06/29/report-chronic-undertreated-pain-affects-116-million-americans/

Our Fear of Opioids Leaves the world in Pain  http://edsinfo.wordpress.com/2014/10/27/our-fear-of-opioids-leaves-the-world-in-pain/

MT @toni_bernhard: My new piece. It should be of interest to anyone whose illness is questioned: http://www.psychologytoday.com/blog/turning-straw-gold/201410/i-m-sick-what-is-wrong-me …Dr. Paul Christo @DrPaulChristo  ·  Oct 27

California Doctor….    http://paindr.com/california-doctor-unveils-painful-abyss-facing-patients-in-pain/

Physician Suicide:  http://t.co/4vhF63eD6N

Physician Risks:

The damage done by the war on opioids: the pendulum has swung too far http://www.dovepress.com/articles.php?article_id=16781 …

Trial Verdict:  Dr. Baldi Not Guilty on All Charges http://whotv.com/2014/05/01/baldi-trial-not-guilty-on-all-charges/

What are Patients to do when Law Enforcement Closes Clinics?  http://missoulian.com/news/state-and-regional/ravalli-county-health-officer-says-patients-of-raided-florence-clinic/article_cf2e1690-bac0-11e3-848e-001a4bcf887a.html

Killing Pain in Perry county http://www.kentucky.com/2009/12/12/1056711/killing-pain-in-perry-co.html

Patient role in helping physicians:

“Unless patients wake up and fight for the providers of care, we are headed for the sickest system in the world.” http://www.kevinmd.com/blog/2014/03/dissatisfied-doctors-provide-good-patient-care.html …