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.
The Family of Pain is a Club Nobody wants to join,
But Isolation is Worse. –Lynn Webster, MD
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/