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Verstehen, through shared perspectives


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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/

 


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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!!!

 


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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.”