Winter 2020
Validation and Dignity
Penney Cowan

We have spent a lot of time talking about the best way to describe one’s pain. The ACPA has pain maps that help you show the intensity of your pain, where it is, and how it feels, explain what makes it worse, and for some, the symptoms they experience. 
These maps have been effective in helping people describe their pain so that the health care professional will better understand the pain.  Why is it important that the ACPA provide these to people with pain? One very simple answer is that more than anything, a person living with pain wants to have his or her pain validated. We want their health care professionals to know that our pain is real. When a person has to “prove the pain” they become very defensive and visits to the health care professional don’t always go well.  
If pain management is to be beneficial, the person with pain and the health care professional must work together as a team. If there is doubt about the pain, it gets in the way of working toward a means to live with the pain, to learn how to manage it so that you can return to a better quality of life and increase your function while reducing your sense of suffering. Anyone who has lived with pain for a long time knows that when all is said and done, there may still be some level of pain that they will have to live with. But to live with pain and exist with pain are two very different things.  
When a person’s report of pain is believed, it calms their defensiveness and can help them work toward managing their pain. Interestingly, it also provides some sense of dignity to know that someone understands that they are in pain. If you think about it, no one wants to live with pain. To have pain and be questioned about the reality of the pain is extremely difficult to handle and depressing. When a person is believed about their pain, they will be treated with the same respect and dignity as anyone else. 

Recently the American Chronic Pain Association and some if its members took part in a project called This Is Pain . Seven members were selected and flown to New York to tell their stories to a visual artist, Trina Merry, who translated their stories into a beautiful work of art on their bodies. When asked about the experience, one of the things that stood out to me was that each person had been treated with dignity and respect. I think the fact that the artist believed their stories, listened to what they had to say, and was able to capture each story in such stunning artistry speaks volumes.  I invite you to see their pictures and hear their stories as we explore This Is Pain
This is Pain
Over the years, the American Chronic Pain Association has developed many tools to help you better communicate your pain to your health care professional. They are easy, free, and help you make the most of your time with your health care professional by providing a picture of your pain. While these pain maps are useful tools for you, several of our ACPA members had the opportunity to go an extra step when describing their pain. We want to thank BioDelivery Sciences International, Inc. for supporting a unique project called This is Pain

Seven ACPA group facilitators were selected to tell their pain journey to an artist, Trina Merry, who depicted their story on the body of that person. Once completed, they were made into life size posters and displayed at the Oculus in New York City from December 12 to 15, 2019. You can hear the participants tell their stories and see it being created on their bodies at .  

We asked each of them to share what this experience meant to them. In their own words here are their comments .
Alan Zanetell
Englewood, Colorado Chapter 

A l ’s chronic pain began in 1966. Nearly two dozen surgeries (including twelve spinal fusions) later, Al’s entire adult life has been dominated by finding ways to cope with chronic pain each day. He described his pain as hot lava that courses throughout his body, burning into each and every muscle, like a volcano erupting.

I want to express my appreciation for being given the opportunity to participate in This Is Pain .I couldn't be more honored than to be chosen as one of the participants. What a strong validation of dealing with chronic pain for over 50 years.

The opportunity to have a major part in This Is Pain has given a great ending to what had been a difficult 2019. The replies are amazing from so many dealing with pain everyday of their life. I, along with the program, am making differences in many lives.
But, more than that, I feel strongly about telling my story with the hope it may reach and help untold number of pain suffers. Even throughout more decades than I care to count, I know I and others can rise above their pain daily by expressing and acting upon that desire.

Thank you for this wonderful opportunity. So, how did I know 54 years of chronic pain would give me the opportunities to help others?
Cindi Scheib 
Harrisburg, Pennsylvania Chapter 

C indi's life was turned upside down over Labor Day Weekend, 2014. She started experiencing pain all over her body, which she describes as feeling like cactus splinters driving into her body incessantly. These jabbing sensations have deeply affected her quality of life. Yet Cindi has never let chronic pain define who she is as a person, and remains grateful for things she does have in life—her loving sister, her friends, and the ability to give back by working with the American Chronic Pain Association.

Gosh, it was so wonderful to meet you all at the event! I had the most outstanding and incredible experience working with the This is Pain project! Literally, I feel that it was a highlight of my life! I was treated so wonderfully, and felt so respected and honored! From the moment I left my home, until the moment I arrived home, I was treated like a queen. During the interview, I felt heard. Everyone was so accommodating, empathic and they truly seemed engaged in hearing my story. During the painting process, I felt respected! I have never allowed myself to be so vulnerable, “ naked” in front of a whole crew of people. But I knew that this was a once in a lifetime opportunity, to be painted by Trina Merry! They allowed me to have some wine to help me relax, and they played my choice of music... and I still can’t believe that I stood there for 7 hours of painting and never had to go to the bathroom! Initially, I wore the black robe, but after the first hour, I was just exposed and naked to everyone. However, everyone was so professional and courteous to me and to my sister. It was incredible that I became comfortable with being painted naked with so many people watching! ( I think the wine helped. LOL) By the way, the catered food was so delicious and my hotel room was perfect. Thank you ACPA for allowing me to be involved in this project! 
Shannon Green
Austin, Texas Chapter

S hann on, a wife and mother, lives with chronic pain every day. She describes her pain as a tornado powering through her body, leaving a path of destruction in its wake. Shannon believes kindness is the key to making life easier for those living with this condition, as simple acts of compassion can make even the hardest of days seems a little more manageable.                                                                                
The opportunity to meet people with shared experience was invaluable. The amazing Trina Merry painted a tornado scene on my back. It was interesting to see how pain was interpreted so differently among us.

The NYC trip gave me my confidence back. I was able to walk 6 miles in one day which was a big surprise for me. This prompted my new goal of 8,000 steps per day. This new goal is a game changer. I am so thankful to the American Chronic Pain Association for this opportunity.
Tom Norris
Los Angeles, California Chapter
T om is a military veteran whose career was cut short due to the onset of chronic pain – an experience he describes as wrestling a tiger that is on fire. He hopes that by sharing his story, people everywhere will develop an understanding of what living with chronic pain truly feels like. 

When I was first approached about participating in this effort to “show” chronic pain, I had my doubts. I thought body painting had died out in the 80’s! Boy, was I wrong!
The pictures of Trina’s interpretation of my back and referred abdominal pain has become a standard part of my group and individual sessions. It is amazing just how useful this illustration is in getting someone’s attention. I had a ball participating in This is Pain!

Every facet of participating in this campaign was first class! At every turn, I was treated with respect and courtesy. Every detail of my interviews, journey to and from New York, car arrangements in New York City, hotel accommodations, and filming was taken care in such a manner that I knew this was a very important effort! 

The organizers made extra efforts to take care of each of us. I was amazed at the ease with which my requirements were accommodated. I was able to get extra leg room for each of my flights and had no problem getting wheelchair accommodating transportation to and from the airports. The organizers were able to make sure I had the extra day at either end of the trip to recover to “be my best” for the interview and camera. The room at the hotel was handicapped accessible and was great!  

Frankly, I was surprised at how “low stress” the interview and painting schedule was for me. I felt I was part of the team and integral to the production schedule. I was interviewed on camera by the director and never felt any stress or pressure. The director was extremely personable and interested in me and my journey with chronic pain. I felt I found a friend. When my turn came to get painted, Trina and her associate put me totally at ease. Although I was a little leery of being in underwear in front of a group of women (I joked that I had been naked in front of only my wife for the last 31 years!), the entire situation was not stressful or strange at all. Everyone was professional and there to get a job done. Although I was a little stiff by the time the painting session was finished, the result was worth it. I was touched by the care with which everyone treated me. An assistant even offered to help me get the paint off my back after the photography session was complete.

When I had problems with flight on the way home, I was able to reach out and contact the program coordinator to easily resolve the problem. From start to finish, this was an amazing effort that was well coordinated and organized. I understand that each of us was treated with respect and courtesy through the effort.

Thank you ACPA for arranging my participation in this amazing effort to educate everyone about chronic pain. I would jump at the opportunity to do this again.
Trish Walsh
Latrobe, Pennsylvania Chapter

T rish has been living with chronic pain for 32 years. She battles chronic pain in her knees, making it difficult to stand, walk or even sit comfortably at times. Trish wants the world to know that chronic pain is real and that those that live with this condition face enormous challenges each and every day.
My trip to New York City as part of the “This is Pain” campaign was both exciting and scary at the same time. I was so surprised to get the call about participating and very honored to be chosen. The fact that I had never been on a plane or to a big city did make me question myself, but passing on this opportunity was not an option. I have been trying to help give those who suffer with chronic pain a voice for more than 20 years. There was no reason to be afraid because each and every detail was seamlessly coordinated by the Mission team. From car service to and from the airport, and each day to the studio, to the fabulous catered meals each day on set. No stone was left unturned. The on-camera interview was incredible. I received a peek at what it was like to be on TV. The entire production crew was wonderful and made me feel calm and comfortable.

The painting session with Trina Merry was unbelievable. Her vision to bring the pain of each participant to life was spectacular. Lastly, the “networking” breakfast set for the final day of my journey gave me the chance to meet not only other ACPA group leaders, but also some of the people from BioDelivery Sciences International, Inc. Everyone’s excitement in hearing our stories could only be described as amazing---total respect from each person. Although I was exhausted when I arrived home it was a fantastic voyage that I am extremely proud to be involved with. 
Catherine Cartwright
Vallejo, California Chapter

C atherine has lived with the effects of chronic pain, both on her body and on the relationships with those around her, for 21 years. While she often struggles to maintain her independence, Catherine channels the power of a positive mindset to help cope with her condition and is committed to being the victor over her circumstance.
I had the honor and privilege to be a part of the “This is Pain” Exhibit in New York City. It was one of the most exciting events in my life.

It brought light to chronic pain, especially invisible pain. Most people feel if you can’t see it, it isn’t real. For the first time in my chronic pain history I felt this would validate my invisible pain outside of my medical and support system. Now it has a voice not just for me, for others as well.

Having my whole body painted was an awesome experience in itself. The strings represented how my Fibromyalgia feels, like a phone or electric main box wires being pulled all at the same time. Being porcelain described for me the stiffness of my osteoarthritis.

The interview served to highlight and describe the facts of how life is for people who live their lives in spite of chronic pain. We are victorious. The main point is to acknowledge and bring awareness to the public that people in chronic pain; the visible as well as the invisible now has a face and place in pain history.

I would like to sincerely thank the This is Pain staff, Trina Merry, the artist, and all others who were a part of this great work and the American Chronic Pain Association for this experience and being my beacon of light.
Patricia Hubert
Summit, NJ Chapter
P atricia’s life with chronic pain began in 2003 following an injury sustained during yoga practice. She describes her pain as burning, electric lightning bolts sending shockwaves through her body. Patricia’s hope is that everyone living with chronic pain can be heard and believed, no matter the cause. 

I am pleased to have had the opportunity to participate in the This is Pain initiative this past November. I was able to convey the pain experience, what it really feels like, and to share the journey I’ve had with pain which persisted following a spinal injury 17 years ago, eventually becoming chronic. Furthermore, I was able to describe the impact it has had on my life. 

When I received the request to participate in my inbox I thought I was too busy. But the nagging voice in my head told me: Pat, you have to do this for everyone with chronic pain. We need to be heard and understood. This is an ethical/moral decision. I retrieved the email and entered my data, figuring that would probably be the end of it.

When I was subsequently contacted by the person who would interview me, I was impressed with her masterful questioning which built on my responses and prodded me to think deeper. She, and a second interviewer, were very respectful of my need to pause at times to further reflect on the deep hurt, the feelings of isolation, and of being alone in my suffering. I was brought to tears and they allowed me those tears. I was able to be vulnerable with them due to their sensitivity, and I really appreciated it. Further, it helped me realize I still have feelings which needed to be acknowledged and reconciled. 

The artist later interviewed me directly and asked for my description of the pain sensation. She also asked what color it is—something I never thought about. My pain begins in my buttock and continues down one leg. Because of the location I was not comfortable with the artist paining directly onto my skin. A model was used for the actual painting of my pain, which is neuropathic and variable based on the time of day, activity level and other factors. At various times it pulls, burns, is sharp, dull, hot, or shock like. There are times when nothing will calm it. I’ll change position, walk around, etc. and it changes the intensity slightly. I also have knee pain on the same side from an injury and have altered pain sensation there, called allodynia, which is actually a decrease in the knee pain intensity. 

We stayed in a great hotel in the East Village and were all together only once for a great breakfast. I believe the others were quite brave for having their bodies painted. The artist took quite a bit of artistic liberty with her representation of my pain using a reverse blue light technique. She painted my pain as widespread bodily pain. I cannot even imagine how I’d cope with that. 

I know that the invisible nature of pain is often a barrier. It is my hope that the This is Pain initiative will make a difference in removing this barrier. The director of filming was an attentive young man who asked great questions and was quite sensitive and truly interested in what I had to say to his pointed questions. He later confided that his wife has chronic pain and this experience interviewing people with pain has caused him to feel regret for his prior relative lack of understanding of her true suffering. He said he called her the first day at a break and each evening has apologized for his lack of understanding before. This tells me something about chipping away at barriers. 
Reducing the Risk of Psychological Mislabeling in Chronic Pain 1

Howard B. Pikoff, State University of New York at Buffalo
Reprinted with permission
General practitioners devote much of their clinical time to chronic pain. Back, joint, and musculoskeletal pain consistently rank among the top five reasons for visiting a doctor. 1 One of the pitfalls in treating chronic pain is the tendency to over-psychologize, a practice I call psychological mislabeling. 2

Psychological mislabeling occurs when anxiety, depression, stress, and the like are routinely assumed to play a major role in cases of back pain, headache, fibromyalgia and other poorly understood chronic conditions.

When we invoke the biopsychosocial model (BPSM) – particularly the psychological component –selectively in chronic pain, we are likely mislabeling. When we think of the BPSM only when confronted with difficult patients, inconsistent symptoms, or failed therapies, we perpetuate the misconceptions of a discredited psychogenic era. Today, the standard psychosomatic handbook no longer ascribes a psychological cause to arthritis, hay fever, tuberculosis, hypertension, diabetes or any of the other so-called psychogenic disorders of the 1950s. Yet, the invalidation of patients through psychological innuendo continues to "…pollute the therapeutic relationship by introducing an element of mutual distrust as well as implicit, if not explicit, blame…demoralizing the patient who feels at fault, disbelieved, and alone." 4
1 This paper is a preprint of Pikoff, HB (2020). Psychological mislabelling in chronic pain: reducing the risk. British Journal of General Practice (Royal College of General Practitioners), 70 (690), 25. ( British Journal of General Practice )

Undermining of the doctor-patient relationship through misuse of the BPSM carries a special irony in primary care. General practitioners were among the earliest and most enthusiastic supporters when the BPSM was introduced in 1977 as a means of improving the therapeutic alliance. Such is the allure of an overtly psychological medical model.

The overemphasis on psychological explanation is a legacy of a deep-seated psychogenic bias that ran through medicine for much of the last century. Freud developed the psychogenic model in the 1880s. At the center stood a psychological gatekeeper whose job was to regulate the entry of anxiety-provoking thoughts into consciousness. Freud believed such thoughts, frequently sexual, exerted continual pressure for conscious expression. Occasionally, through a process of psychic transmutation – Freud's "mysterious leap" – these thoughts would break into consciousness not as thoughts but as physical symptoms. This was conversion. And for the next 100 years, the idea that highly charged emotions could metamorphose into physical signs and symptoms mesmerized both medicine and popular thought
Advances in pathophysiology, pharmaceuticals, and medical behavioral therapies started to erode the psychogenic model in the middle of the 20th century. Biobehavioral treatment supplanted the psychogenic model in the multidisciplinary pain centers that blossomed in the 1980s.

Importantly, the assumptions of the biobehavioral approach offer a buffer against psychological mislabeling. Foundational assumptions of biobehavioral treatment are that: chronic pain is biologically based; a nonresponse to medical or physical therapy is not an indication of psychological involvement; and biobehavioral pain management is not psychotherapy – it typically focuses on acquiring coping skills to pace activities, increase productivity, avoid flares and triggers, and optimize medication use rather than on emotional concerns. This is not to suggest that biobehavioral therapy is indifferent to anger, depression, personality disorders, and the like, only that when psychopathology is present it is treated as comorbid to the patient's pain condition.

Reassurance on these fundamental points can be therapeutic for patients who have been demoralized by the suggestion, implicitly or explicitly, of an underlying psychological problem. It can also set the stage for behavioral counseling by the primary care provider or referral to a pain management center or behaviorally oriented pain specialist.

Alignment of patient and practitioner perspectives around a biobehavioral model reduces the risk of psychological mislabeling while strengthening the therapeutic alliance. It is a pain management asset that should not be underestimated.
1. St. Sauver Jl, Warner DO, Yawn BP, et al. Why patients visit their doctors: assessing the most prevalent conditions in a defined American population. Mayo Clinic Proc. 2013; 88(1): 56-67
2. Pikoff HB. A study in psychological mislabeling: the rise and (protracted) fall of psychogenic fibromyalgia. Int Musculoskelet Med. 2010; 32(3): 129-132
3. Levenson JL, editor. The American Psychiatric Publishing textbook of psychosomatic medicine: psychiatric care of the medically ill, 2nd ed. Washington, DC: American Psychiatric Publishing; 2011.
4. Katz J, Rosenbloom BN, Fashler S. Chronic pain, psychopathology, and DSM-5 somatic symptom disorder. Can J Psychiatry. 2015; 60(4): 160-167.
5. Smilkstein G. The biopsychosocial model: whose legacy? J Fam Pract. 1982 ; 15(4): 811-812.
6. Breuer J, Freud S. Studies in hysteria. New York: Nervous and Mental Disease Publishing 
Advice from the U.S. Centers for Disease 
Control and Prevention (CDC)
Steps to Prevent Illness

There is currently no vaccine to prevent coronavirus disease 2019 (COVID-19).
The best way to prevent illness is to avoid being exposed to this virus.
The virus is thought to spread mainly from person-to-person:
  • Between people who are in close contact with one another (within about 6 feet).
  • Through respiratory droplets produced when an infected person coughs or sneezes.

These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs.

Older adults and people who have severe underlying chronic medical conditions   like heart or lung disease or diabetes seem to be at higher risk for developing more serious complications from COVID-19 illness. Please consult with your health care provider about additional steps you may be able to take to protect yourself.

Take Steps To Protect Yourself
Clean your hands often
Wash your hands often with soap and water for at least 20 seconds especially after you have been in a public place, or after blowing your nose, coughing, or sneezing.
If soap and water are not readily available,  use a hand sanitizer that contains at least 60% alcohol . Cover all surfaces of your hands and rub them together until they feel dry.
Avoid touching   your eyes, nose, and mouth  with unwashed hands.
Avoid close contact
A void close contact  with people who are sick Put  distance between yourself and other   people  if COVID-19 is spreading in your community.
This is especially important for  people who are at higher risk of getting very sick .

Take steps to protect others
Stay home if you’re sick

Stay home  if you are sick, except to get medical care. Learn  what to do if you are sick .
Cover coughs and sneezes

Cover your mouth and nose  with a tissue when you cough or sneeze or use the inside of your elbow.
Throw used tissues  in the trash.
Immediately  wash your hands  with soap and water for at least 20 seconds. If soap and water are not readily available, clean your hands with a hand sanitizer that contains at least 60% alcohol.
Wear a facemask if you are sick

If you are sick:  

You should wear a facemask when you are around other people (e.g., sharing a room or vehicle) and before you enter a healthcare provider’s office. If you are not able to wear a facemask (for example, because it causes trouble breathing), then you should do your best to cover your coughs and sneezes, and people who are caring for you should wear a facemask if they enter your room.  Learn what to do if you are sick.

  If you are NOT sick:  You do not need to wear a facemask unless you are caring for someone who is sick (and they are not able to wear a facemask). Facemasks may be in short supply and they should be saved for caregivers.
Clean and Disinfect

Clean AND disinfect  frequently touched surfaces  daily . This includes tables, doorknobs, light switches, countertops, handles, desks, phones, keyboards, toilets, faucets, and sinks.

If surfaces are dirty, clean them:  Use detergent or soap and water prior to disinfection.

To disinfect:
Most common EPA-registered household disinfectants will work. Use disinfectants appropriate for the surface.

Options include:
·          Diluting your household bleach.
To make a bleach solution, mix:
o    5 tablespoons (1/3rd cup) bleach per gallon of water
o    4 teaspoons bleach per quart of water
Follow manufacturer’s instructions for application and proper ventilation. Check to ensure the product is not past its expiration date. Never mix household bleach with ammonia or any other cleanser. Unexpired household bleach will be effective against coronaviruses when properly diluted.
·          Alcohol solutions.
Ensure solution has at least 70% alcohol.
·          Other common EPA-registered household disinfectants.
Products with  EPA-approved emerging viral pathogens  claims are expected to be effective against COVID-19 based on data for harder to kill viruses. Follow the manufacturer’s instructions for all cleaning and disinfection products (e.g., concentration, application method and contact time, etc.).
The Alliance to Advance Comprehensive Integrative Pain Management (AACIPM) is the first-of-its-kind multi-stakeholder collaborative, comprised of people living with pain, public and private insurers, government agencies, patient and caregiver advocates, researchers, purchasers of healthcare, policy experts, and the spectrum of healthcare providers involved in the delivery of comprehensive integrative pain management.

Comprehensive, interdisciplinary, team-based, multimodal, integrative pain management (CIPM) is widely accepted as the standard of care for people living with pain. However, this is simply not happening widely. CIPM must be understood by the public and health care professionals, covered by public and private insurers, and accessible to people with pain. Promoting CIPM is vital to solving our nation’s overlapping public health crises of chronic pain, opioid misuse and overdose, and mental health disorders.  
AACIPM is an initiative, not an organization, and is built by the strength of engagement with its participating stakeholders. We are grateful to the Lovell Foundation for its grant to fund this important work and to our Advisory Committee members and other leaders involved in  AACIPM’s activities .

Download this diagram for an easy visual to understand what AACIPM is.

For the latest in events and meetings check out our calendar
The U.S. Department of Health and Human Services (HHS) Office for Human Research Protections (OHRP) works to protect the rights and welfare of participants in research conducted or supported by HHS. An important part of protecting research participants is helping them understand research and how participating might affect them so that they can make an informed decision about whether to volunteer. You are receiving this information because your organization and your members have an interest in health care and health research.

OHRP has developed a website called About Research Participation , in both English and Spanish, to inform and educate the public about research and research participation.

About Research Participation includes informational videos, infographics, a list of questions to ask researchers, and additional resources. These materials are available free of charge for broad public consumption. No permission is needed for sharing and distribution.

If you have comments or questions about our informational resources, email us at
NEW - ACPA Support Groups:

Diane Murphy - Peoria , IL

Mary Hughes - Charlottesville, VA

Dana Rodgers Bailey - Cookesville, TN

Karen Prescod - Ft. Lauderdale, FL (teens only)

Gifts given to the ACPA
In Loving memory:
 Eva Amir
Given by Linda Brecher

In Loving Memory:
Mike Lester
Given by Cathy Loewen

In Loving Memory:
Carol Emerson
Given by Penny Saunders
Connie Neal

In Loving Memory:
Jeannie Swayne
Given by Kim Entrop

In loving Memory:
Jodi Ellen Kelly
Given by Joe & Jean DiPietro
Valerie LaVoie and her 1st grade students
Sandra Hreschuk
Christine Swistro

In Loving Memory:
Jeanne Jones
Given by Fremont, NE ACPA Chapter
Mary Peter-Davis, Virginia Livingston, Jim Redmon, Phyllis Kathol, Susan Clinkeneard, and Jennifer Bartling

In Loving Memory:
Brian Quinn
Given by Karen Sorady
Frederick Faught
Jessica Smith

In Honor of:
Lynn Hollinger
Given by Donna Sempek

In Honor of
John B Mannes, Jr.
Given by Pilar Kline Happy Birthday John
Fall 2020 Combined Federal Campaign (CFC)

Consider directing your donation to the American Chronic Pain Association this year.

CFC Code number is:
ACPA Corporate Members
  You shop.  
Amazon gives.

Shopping on line helps the American Chronic Pain Association 
If you use Amazon for your on-line shopping, you can now support the ACPA. It is simple just go to AmazonSmile and select American Chronic Pain Association as your charity from the drop down menu.  
  • Amazon donates 0.5% of the same price of your eligible AmazonSmile purchases to the charitable organization of your choice.
  • AmazonSmile is the same Amazon you know. Same products, same prices, same service.
  • Support American Chronic Pain Association by starting your shopping at