This site provides resources for support group facilitator and others with chronic pain, as well as an area for communications and support. This site is not approved by ACPA management.
Depression can affect your body as well as your mind. Trouble falling or staying asleep is common in people who are depressed. But some may find that they get too much shut-eye.
Chest Pain
2/12
It can be a sign of heart, lung, or stomach problems, so see your doctor to rule out those causes. Sometimes, though, it’s a symptom of depression.
Depression can also raise your risk of heart disease. Plus, people who’ve had heart attacks are more likely to be depressed.
Fatigue and Exhaustion
3/12
If you feel so tired that you don’t have energy for everyday tasks — even when you sleep or rest a lot — it may be a sign that you’re depressed. Depression and fatigue together tend to make both conditions seem worse.
Aching Muscles and Joints
4/12
When you live with ongoing pain it can raise your risk of depression.
Depression may also lead to pain because the two conditions share chemical messengers in the brain. People who are depressed are three times as likely to get regular pain.
Digestive Problems
5/12
Our brains and digestive systems are strongly connected, which is why many of us get stomachaches or nausea when we’re stressed or worried.
Depression can get you in your gut too — causing nausea, indigestion, diarrhea, or constipation.
Headaches
6/12
One study shows that people with major depression are three times more likely to have migraines, and people with migraines are five times more likely to get depressed.
Changes in Appetite or Weight
7/12
Some people feel less hungry when they get depressed. Others can’t stop eating. The result can be weight gain or loss, along with lack of energy.
Depression has been linked to eating disorders like bulimia, anorexia, or binge eating.
Back Pain
8/12
When it hurts you there on a regular basis, it may contribute to depression. And people who are depressed may be four times more likely to get intense, disabling neck or back pain.
Agitated and Restless
9/12
Sleep problems or other depression symptoms can make you feel this way. Men are more likely than women to be irritable when they’re depressed.
Sexual Problems
10/12
If you’re depressed, you might lose your interest in sex. Some prescription drugs that treat depression can also take away your drive and affect performance. Talk to your doctor about your medicine options.
Exercise
11/12
Research suggests that if you do it regularly, it releases chemicals in your brain that make you feel good, improve your mood, and reduce your sensitivity to pain.
Although physical activity alone won’t cure depression, it can help ease it over the long term.
If you’re depressed, it can sometimes be hard to get the energy to exercise. But try to remember that it can ease fatigue and help you sleep better.
Note: Click here to submit your statement to your Congressional Representative.
On Friday, July 16, the National Center for Injury Prevention and Control (NCIPC)’s Board of Scientific Counselors (BSC) met to review a report on the new draft Guideline provided by the Opioid Working Group (OWG), a Centers for Disease Control and Prevention (CDC)-appointed outside group of stakeholders whose job was to review the new Guideline.
The new Guideline was authored by some of the same individuals involved in the drafting of the 2016 Guideline. Four out of the five authors are employees of the NCIPC who are injury prevention and addiction specialists, not pain management professionals, nor pain advocates, or pain patients. The fifth, a primary care physician, has for years publicly criticized opioid prescribing for pain in op-eds and interviews. Yet, pain patients and pain management providers will be the groups most affected by the new Guideline which describes how and when to prescribe opioid medication for pain.
The new draft Guideline came after the CDC held interviews with 100 stakeholders to get their views of how the 12 recommendations should be updated. It came after public listening sessions in which dozens of pain patients spoke about how they had been harmed by the 2016 Guideline. It came after FDA issued a report on a public meeting with 450 chronic pain patient-participants as well as a public docket that received 2450 comments held in July of 2018 in the aftermath of the release of the Guideline, in which patients uniformly described the burden of trying to access opioid medication that had long helped them detailing reduced dosing, forced tapering, medical abandonment, increased pain, withdrawal, disability, isolation, inability to work, inability to care for self or others, stigma and discrimination, anxiety and depression, self-harm and suicide as a result of loss of or reduced access to opioids.
It came after the Congressionally-mandated Pain Management Best Practices Inter-Agency Task Force (PMTF), of which the CDC was a member, heard public comment, patient testimonials and received over 9,000 e-mails and letters, 87% of which described loss of access to opioid pain medications that had caused all of the same harms described by the FDA report. And finally, it came after a review of the 2016 CDC Guideline conducted by the PMTF at the request of Congress, which pointed out a number of flaws in the Guideline, chief among them the arbitrary nature of the 90 MME/day maximum dose recommendation and the “3-days or less” and “more than 7 days will rarely be needed” duration of therapy limit following an acute, severely painful event. The PMTF review stressed the wide variability in patient, specific drug and disease or injury characteristics that determine the optimal dose for pain relief in each individual patient.
So, it is especially astounding that the Guideline authors made no significant changes in the Updated Guideline. (Click here to see a comparison of the 2016 vs the 2021 Guideline) The problematic and unscientific dose limits and duration of therapy recommendations are exactly the same as in the 2016 Guideline.
Even more astounding is the focus on reducing and eliminating the legitimate use of opioids for pain management while remaining silent on what patients living in high-impact, relentless severe pain should do for pain management beyond recommending “non-opioid therapies.”
The authors have long said the Guideline is intended for primary care physicians. This is exactly the group who have very little knowledge of current best practices in pain management and are generally not aware of the multitude of therapies including other medications, restorative therapies, interventional procedures, medical devices, behavioral approaches, and complementary therapies that could help patients manage their pain in addition to or in place of opioids. Furthermore, there are many pain patients whose pain is not helped by opioids, or cannot take them for one reason or another, who may be helped by therapies in the categories listed above.
By not discussing these options in the Guideline, the CDC has missed an important opportunity to educate physicians, patients and other healthcare providers about how best to manage pain. Unfortunately, there are barriers to accessing some of these alternate therapies such as lack of insurer coverage and cost. The CDC’s highlighting of these options could help to remove some of these barriers but not if they are not even discussed in the Guideline.
The CDC’s process going forward to arrive at a Final Guideline will be for the BSC to consider the OWG’s report and advise the CDC on the update. (Click here to see the OWG Report.) The CDC’s NCIPC authors will revise the Updated Guideline and post a new Draft Guideline for a 60-day public comment by the end of 2021. The CDC will then revise the Draft Guideline and release an official Final Guideline in late 2022.
What you can do
If you and your healthcare have been impacted by the CDC Guideline, then we urge you to write your Congressional Senators and House Representative.
Tell them your personal story in as concise a manner as possible. Explain how your pain care has been affected by the Guideline. Urge them to tell the CDC to add pain management healthcare providers, pain patients and pain advocates to the group authoring the new Guideline. Request that your representatives tell the CDC not to include daily dose and duration limits on opioid prescriptions for legitimate pain patients who use opioids appropriately to manage their daily chronic pain.
Dose and duration of treatment is not one size fits all. Many respected medical authorities, including the AMA, the FDA and the HHS Pain Management Best Practices Inter-Agency Task Force, have said there is wide variation in dose and duration of opioid therapy that is optimal for each individual patient.
Click the button below to visit our online Advocacy Center and compose your email which will automatically be sent to your Congressional representatives.Send Your Message
Five days until the next full moon. “Harvest Moon” — and one of the biggest/brightest full moons of the year. Predicted to appear in fullness 2-3 days before its official girth. By the way the cats in this house and the wildlife outside it are acting, I think the monthly full-moon effect is upon us already. Restless, wakefulness, alertness — as if anticipating Something.
Raymond Wang/cbc.ca
Full moons are fascinating things! They affect our ‘inner tides’ of hormones in much the same way they affect the ocean’s tides/waves. A woman’s menstrual cycle is set in time with the full moon (unless she uses birth control). Post-menopausal women remain affected, for we still have hormones; just not that specific one. Change the chemistry and behavior changes with it.
My mother sometimes felt the need to “take a moon-light walk”. I remember one particular Summer-moon walk. The moon was almost as bright as sunlight. Except for the deepest forested parts of our walk, we could clearly see our way.
Pininterst/Sylvia Brigitta
The walk took us past a neighbor’s farm — silent/dark. We could smell the farmyard odors of cows, pigs, chickens — all of them tucked up in their shelters for the night. Mom and I walked quietly by, marveling to ourselves at the clear sky overhead and how moonlight sparkled on the macadam road’s uneven surface.
Along the edge of the farm, tall pine trees lined the boundary of the farmer’s land, dark against the paler sky. One shadowy tree looked like a giraffe. Another looked like a bear dangling from a giant pole. The more I looked, the more wild, giant animals I could imagine along that boundary line. My mind wandered into telling myself a story … about giant animals roaming the woods at night … and us humans being nothing more than a quick snack for them.
Night Cows/Jennifer Bowen Hicks/The Sun Magazine
It was at that point in my story that one of the farmer’s cows decided to announce herself. “Mmmooooh!” she cried … and I squealed a little-girl squeal! The cow’s timing fit perfectly into the “quick snack” part of the story unfolding in my head. Mom laughed, of course. Which hurt my feelings, until I realized that she had no way of knowing that my mind had left the macadam road and entered an invisible world of fantasy.
Thinking Brain/memoangeles/Graphic River
It’s a brain-file memory that pops open whenever there is an especially large full moon. And when I see or hear cows. One that makes me smile, shake my head, and laugh at that little girl with her wild-animal imagination.
Now, I’m an old woman whose chronic pain prevents me from doing a lot of things. A recent back injury has further limited my abilities. And then, COVID-19 arrived, changing the world forever. How fortunate I am, however, to have so many brain-file memories of how I used to be and the things I loved doing. And I have done a wide variety of things in my 67 years. I never became an expert at anything, but I did discover that I could become good at doing some things. I like that — discovering what I’m good at!
These days, I’m good at finding new ways to use my grab-stick to get home chores done. Not as rewarding as a lot of other things; yet, I give myself an “atta-girl” with each new discovery. Just like the constant ebb-n-flow of tides/moon-driven hormones, the only constant in Life is CHANGE. We do ourselves a kindness when we adjust our mind to that reality. If we don’t, who knows what shadowy monster will climb down out of the trees to snack us up?
LAST WEEK’S NEURON-STETCHING CHALLENGE:Who said: “All war is based on deception.”
Sun Tzu, in his epic journal: “The Art of War”. Only one person rose to this challenge. Congratulations!
THIS WEEK’S NEURON-STRETCHING CHALLENGE:
Who wrote: “… We grow and thrive when we are brave enough to stand in the center of our own pain and listen to what it is trying to communicate.”
Pop open a few happy brain-file memories today. What path will you follow in the process? Where will the tides of Life take you? How long will you travel before you catch yourself smiling?
This has been a rather nostalgic week, filled with brain-file cascades of fond memories. When I stop to take a closer look, however, I begin to see how each fond memory got its birthing from some fairly harsh experiences. For instance:
A dear friend loaned me a book: “Nine Perfect Strangers” by Australian author Lian Moriarty. In each of the nine main characters I could see something of myself at different stages of my Life. One in particular had more of me in her than any of the others. As I read alongside the cascading brain-files, I smiled. Even when the character was being sorely challenged, I found myself gently smiling in empathy for her, but also in encouragement for her. Hang on, I wanted to say to her; this too shall pass.
I also realized that the author herself must have taken chapters from her own Life Experiences, from her own age-n-stage of selfhood. How else could she have created such real people? We cannot write the Future as it will be; only as we think it might be. We can predict certain outcomes, based on facts presently at hand and what we have learned from the Past. However, predictions are not 100% accurate. It’s only in reviewing (re-looking) at our Past that we can begin to see how we have risen into new Life once the ashes of the Past have cooled enough for safe sifting.
nostalgia: (Greek) returning to the past
Returning — NOT reliving; NOT re-creating; allowing the hot-fire wounds of the Past to heal enough, cool enough, that we can start sifting through those brain-file ashes … and learn how to rise like a phoenix bird into living color again.
As a child, I predicted that I would live forever in my mother’s dark valley … marry some high school sweetheart … repeat the cycle of rural life/poverty/struggle. I was wrong.
In adolescence, I predicted that no one would ever love me (really love) … for I had become damaged goods as a result of dating the wrong young man. I was wrong.
Early adulthood, marriage/children, the two of us working/learning how to budget money/time/energy … I predicted that we had achieved a slice of the American Dream-pie. I was wrong.
For the past two years of this COVID pandemic, decades of global warming, political debates morphing into community violence … I have almost stopped predicting that we humans can turn this thing around and create salvation of Earth/each other. I do not want to be wrong.
We live in challenging times, to put it mildly. Our history is filled with similar chapters, and harder chapters. We have survived. Have we yet learned how to thrive … and in such a way that we avoid being arrogant/narcissistic/smug? Can we thrive and be part of the story that can be written with a collective happy outcome? I predict that humans have not yet evolved to such altruistic levels. I hope I’m wrong.
Another dear friend who lives several states away, owns a prosperous business, born from the ashes of her parents’ farmhouse/lands. Visitors to her B&B see beauty all around, attention to detail, focus on comfort/joy. They do not, however, see any of the ashy Past, the moments of despair/heartache/heartbreak/struggles that burned as hot-n-harsh as any wildfire.
A third dear friend, several more states removed from me, smiles in every letter/phone call, plays piano/sings, helps her neighbors, feeds birds/squirrels, keeps track of others’ lives/struggles. We see her shining like a beacon into our own dark-night moments, leading us into a safe harbor where we can drop anchor/park our words of worry-n-woe, and know that she will pour the healing oil of love in the form of prayers for us. We see only the tip of the iceberg of her own Life struggles … . How many fires, how much ash has she fingered through that we are not aware of? A person of her level of understanding/compassion must have had a fiery Past. How else is compassion/understanding born?
Is this not the way, the only way, we humans will achieve a Future worth experiencing? To sift through the ashes once they have cooled, and stir into New Life the thriving phoenix of our own potential to care again … to care enough … to focus on creating the story of humanity’s Future in which we all transform our ashy Past of personal pain into a safe harbor for self/others. I predict that such a Future is possible. I hope I’m right!
LAST WEEK’S CHALLENGE:
Who said: “… most individuals … simply faced p to the complications of emotions and life. They coped. … We do know that if problems have lasted for more than a month … [they] probably aren’t going to remit spontaneously. … But mental health is the most inexact of sciences. Different things work for different people. Even if a pattern of familiar symptoms appears, if it isn’t causing impairment, it isn’t a disorder. … If you’re OK, it’s OK.”
ANSWER: Dr. Robert N. McLay, in his book: “At War with PTSD — Battling Post-Traumatic Stress Disorder with Virtual Reality”.
THIS WEEK’S CHALLENGE:
Who said: “All war is based on deception.”
Focus: There is more to our ashes of the Past than meets the eye of the Present.
Keep sifting. Keep coping. Keep being nostalgic and forward thinking. There is still something to be done, even when all seems lost in Past mistakes/wrong predictions/false assumptions. Keep hope alive, and watch her rise!
Gentle hugs/much love,
Marian
Thanks so much to all of you for your support of this program, and especially for those kind words of concern for my well-being during September when back issues prevented my being able to facilitate the Group. You’ll never know just how valuable that was to my healing process. Hope rises!
As much as I fight so hard to be strong, sometimes I let my illnesses and emotions get the best of me. More often than I like to admit, I struggle with my illnesses defining me and my life. My life is a rollercoaster with good days and bad days, but it seems to be more bad than good lately. It’s really been eating away at me. My life has been a constant mess of surgeries, unexplained symptoms, halfhearted support from my doctors, and a feeling of hopelessness. It can sometimes be hard to see the light at the end of the tunnel.
There is only so long someone can fight against themselves. To me, that is what it is like to live with a chronic illness. It is a constant battle against yourself to be “normal, to be productive, to be a good parent, partner, etc, and to be strong and act like it doesn’t bother you. It can be so tiring wearing that mask day in and day out, and soon it begins to crumble.
Along with gastroparesis and endometriosis, I also suffer from depression and anxiety. Stress is an everyday part of my life, and unfortunately, stress can play a big factor in setting up for a flare. It is so incredibly hard when you have multiple illnesses that all play off each other, all have extremely different “preferred diets,” and that have overlapping symptoms. It’s almost impossible to make them all “happy,” as I like to say.
Every day is a surprise — will I have a mild flare up today? Or will today be a “let’s not get out of bed at all and binge watch Netflix while you cry into your heating pad” kind of day? Maybe I’ll be lucky and have no pain at all! That’s a joke, honestly. Sometimes I know before I even open my eyes for the first time. Others I won’t know until my feet touch the floor and I start moving through my morning.
Nausea and vomiting on the daily. Add in some cramping, burning, aching…pretty much anyway you’re able to describe pain, I will more than likely experience it in a day’s time. All while juggling doctor appointments, school pick up/drop off, grocery shopping…or attempting to, anyway.
I say “attempt” because, whether I like to admit it or not, I have my really bad days where I am almost completely useless. Days where the pain is at an all-time-high, or my stomach is backed up beyond capacity and all I can do is throw up all day long; where I can only lay in the fetal position with two heating blankets and can’t even think about moving without agonizing pain.
It breaks my heart when I can’t even get out of bed to help my kids get ready for school, or when I have to ask our oldest to pack her brother’s lunch because the sight and smell of any kind of food is too much, or when I completely lose my marbles over something miniscule and silly.
Chronic pain can do a lot of things to your body not just physically, but mentally as well. It’s exhausting, frustrating, and constantly on your mind. Sometimes I don’t even know who I am anymore.
My pain and my illnesses have taken so many things away from me. There are days, more than I like to admit, that I let them win. I let the pain take over and control not only my body, but my heart as well. I can be short-tempered and emotional, too exhausted to care about anything. I give up and cry “why me,” wondering what I ever did to deserve this, pushing myself deeper into the darkness.
However, there are even more days where I push through the pain, push through the anxiety, push through the fatigue. And sometimes, it is merely just to make it through the day, to function at my bare minimum.
My illness has taken so many things away from me, but I am not going down without a fight. But today was a rough day, and I’m going to take a break and rest. And that’s OK, to take a break, to let your body do what it needs to do. Never feel guilty for caring for yourself first.
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How the buzzword “catastrophizing” stigmatizes people with chronic pain
By Gwenn Herman, LCSW, DCSW
The first time I heard the word “catastrophizing” being used to describe the pain experience on a national level was at a chronic pain lecture at the National Institutes of Health. It sent shivers through my body.
After 25 years of living with chronic pain and 20 years working with the pain community as a clinical social worker, I have become an expert in the field and what it takes to fight to take back your life from intolerable, daily pain while creating a quality of life. I was horrified at the use of this pejorative word and voiced my reaction.
The response that I received was condescending and reflected zero knowledge of what it is like living in the body of someone with chronic pain.
Medical and mental health professionals in the field of chronic pain commonly use this terminology with each other and with their clients/patients. At best, “catastrophizing” is insensitive to patients’ very rational and reasonable response to the impact of pain on their lives. At worst, it perpetuates a harmful stigma and creates yet another obstacle to effective pain management.
How did this happen?
Let’s go back and see how this term has developed since 1962.
Current Definitions of “Catastrophizing”
Merriam-Webster: to imagine the worst possible outcome of an action or event: to think about a situation or event as being a catastrophe or having a potentially catastrophic outcome
Dictionary.com: to view or talk about (an event or situation) as worse than it actually is, or as if it were a catastrophe: Stop catastrophizing and get on with your life! She tends to catastrophize her symptoms.
Free Medical Dictionary: Exaggerated focus on perceived failures in one’s past, present, or future; associated with mood disorders, especially depression, and chronic pain.
American Psychological Association (APA) Dictionary of Psychology: to exaggerate the negative consequences of events or decisions.
History
According to an article published in 2009 [1], the term “catastrophizing” was formally introduced by Albert Ellis [2] in 1962 and subsequently adapted by Aaron Beck [3] in 1979 to describe a maladaptive cognitive style employed by patients with anxiety and depressive disorders. The article explains the theory as follows:
“At the core of their definitions of catastrophizing was the concept of an irrationally negative fore-cast of future events. Similarly, pain-related catastrophizing is broadly conceived as a set of exaggerated and negative cognitive and emotional schemas brought to bear during actual or anticipated painful stimulation. In early studies, Chaves and Brown defined catastrophizing as a tendency to magnify or exaggerate the threat value or seriousness of pain sensations [4], and Spanos and colleagues emphasized pain-related worry and fear, coupled with an inability to divert attention away from pain” [5].
After further years of academic discussion, the American Psychological Association (APA) published a study of a new Pain Catastrophizing Scale in 1995 which was described as a “valid index of catastrophizing in clinical and non-clinical populations.”
I am including the scale here so that people with chronic pain can gain insight into the tools their health care provider may have been trained to use. The basic concept appears to be that the 13 elements of the scale (most of which are experienced by every person with chronic pain) are not grounded in reality, but in the patient’s “innermost need” to exaggerate, magnify, or obsess.
Pain Catastrophizing Scale
I worry all the time about whether the pain will end. (H)
I feel I can’t go on.
It’s terrible and I think it’s never going to get any better. (H)
It’s awful and I feel that it overwhelms me. (H)
I feel I can’t stand it anymore. (H)
I become afraid that the pain may get worse. (M)
I think of other painful experiences. (M)
I anxiously want the pain to go away. (R)
I can’t seem to keep it out of my mind. (R)
I keep thinking about how much it hurts. (R)
I keep thinking about how badly I want the pain to stop. (R)
There is nothing I can do to reduce the intensity of the pain. (H)
I wonder whether something serious may happen. (M)
(Note: For the items listed above, (R) Rumination, (M) Magnification, and (H) Helplessness–terms used to indicate methods of ineffective coping.)
Why Did This Happen?
Why did stigmatizing chronic pain become such an obsession in Western civilization that it led learned academics to devise scales about “catastrophizing,” rather than treatment plans to help people manage their pain and better cope with the changes in their lives due to pain? The answer lies in our society’s fundamental attitude toward pain, which is deeply rooted in stigma and dogma.
People with chronic pain are labeled with a variety of terms: malingerer, lazy, manipulative, sissy, unproductive, exaggerating, magnifying symptoms, hysterical, looking for an easy way out, drug seeker, and “broken.” Catastrophizing is just another label to add to the list.
Consequently, many people with chronic pain are informed by their health care providers that the pain is “in their head,” they need to “suck it up,” they should “learn to live with it,” and of course, told the ridiculous idiom, “no pain, no gain.”
This is pain shaming. It is a result of deep-seated stigma and bias. It is not only insulting and disrespectful to the patient, but also medically counterproductive. Shaming makes people feel worthless. Shame leads to depression, anxiety, and suicidal thoughts.
What chance do people with chronic pain have of receiving appropriate medical treatment if they are negatively labeled even before walking through a provider’s door?
The Remedy
We want health care providers to know that pain is real. Catastrophizing is just another pejorative label. It minimizes and negates the experience of living with chronic pain. The latest statistics find that 20 million individuals live with high-impact chronic pain, or pain that significantly restricts the ability to work and engage in daily activities. We have long known that chronic pain is the leading cause of long-term disability. A recent report found that at least 10 percent of all suicides in America involve chronic pain.[6]
People with pain are not overstating their despair or misconstruing the likelihood of future pain, and the consequences that will result.
We need our providers to listen to us and learn how chronic pain changes every aspect of our lives, become educated in the psychosocial stages, the grief process, recreating our lives, pacing, flare-ups and relapses, sleep deprivation, the commonality of suicidal thoughts, the importance of nutrition, effects on sexual intimacy, family dynamics, workplace issues, Social Security Disability, workers’ compensation, and countless other issues.
We need providers to realize that underneath this pain is a person who may have been just like them at one point; able to work a 40 week, have a family, get out of bed without pain, take a shower every day, enjoy hobbies, play sports, travel, and idly complain that they stubbed their toe.
We also want providers to understand that pain is pain. There is no difference between the impact of cancer pain or pain from migraine, temporomandibular joint, irritable bowel syndrome, sickle cell disease, interstitial cystitis, rheumatoid arthritis, fibromyalgia, trigeminal neuralgia, complex regional pain syndrome, peripheral neuropathy, myalgic encephalomyelitis, chronic fatigue syndrome, and so forth. It does not matter what the cause is — the pain deserves and needs to be addressed and properly and comprehensively treated.
The symptoms and severity may vary, but we all go through the same psychosocial changes in our lives. We each deserve an individual and flexible treatment plan. Pain is complex; it changes from moment to moment. One day we can go out to the store and maybe for the next week we will be flat on our backs. Alcoholics Anonymous says addiction is a “baffling disease.” Well, so is chronic pain. The provider’s job is to understand this and to work with us.
I readily concede that there is a small proportion of people with chronic pain who do receive secondary gain [7] from the pain, but that does not mean they do not have pain. It means the provider needs to spend more time with them to provide the appropriate treatment.
With all the new scientific knowledge of neuroplasticity, central sensitization, how pain changes the brain, nervous system, muscles, neuroreceptors, microbiome, and proteins, how can a medical provider say we are catastrophizing? Look at the science. Understand the whole person. Once people have lived with ten years of 10+ pain 24 hours a day for months or years, they learn about the disease, the hopelessness, isolation, depression, and the realities of a never-ending healing process.
I have not even spoken about babies born with pain and not being treated, or the undertreatment of children with chronic pain, or how people of color are subjected to unconscious bias and suboptimal health care or how veterans returning from combat are labeled “broken” and cast aside.
These unique populations face additional discrimination and misunderstanding on top of the existing stigma surrounding pain.
We are complicated cases that need time from our providers and their active listening without judgment.
Pain Shaming – Language Matters
Language matters. Pain literacy matters. The use of the terms “maladaptive behaviors” and “catastrophizing” both have negative connotations that minimize a patient’s pain and negate the experience of living with chronic pain. The terms are essentially pejorative and judgmental. They stand in direct contradiction to the concept of chronic pain as a biopsychosocial disease, implying a degree of blame on the part of the person with chronic pain. It would be best to banish these pain shaming terms from the medical lexicon.
Creating a New Normal: Reinventing-Recreating One’s Self
What really needs to be emphasized instead is an understanding of the biopsychosocial concept of living with chronic pain. It affects every aspect of a person’s life and the loved ones around them. It is a disease of the nervous system that changes with time. Terminology is just terminology, but “creating a new normal” needs to be the goal of treatment. This entails building on the patient’s strengths and teaching them how to cope with their disease and develop a quality of life in the body that they have now. Pain is traumatic, and that trauma changes the body drastically. When a person learns how to live in their body as it is, then the healing process begins, and the risk of suicide decreases. Instead of attaching negative labels and starting from that premise, the provider should be saying: “Your pain is real, and your emotions surrounding it are valid. Let’s devise an individualized treatment plan to deal with it.” Having an educated, knowledgeable, compassionate provider can save us years of suffering and searching for help. It could even save lives.
References:
Quartana, Campbell & Adams, Pain Catastrophizing: a critical review, Expert Review of Neurotherapeutics Volume 9, 2009
Ellis A. Reason and Emotion in Psychotherapy. Lyle Stuart; NY, USA: 1962.
Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive Therapy of Depression. Guilford Press; NY, USA: 1979.
Chaves JF, Brown JM. Spontaneous cognitive strategies for the control of clinical pain and stress. J Behav Med. 1987;10:263–276.
Spanos NP, Radtke-Bodorik HL, Ferguson JD, et al. The effects of hypnotic suggestibility, suggestions for analgesia, and utilization of cognitive strategies on the reduction of pain. J Abnorm Psychol. 1979;88:282–292.
Chronic Pain May Contribute to Suicide: In this study, researchers led by Dr. Emiko Petrosky from the U.S. National Center for Injury Prevention and Control analyzed data on more than 123,000 suicides in 18 states between 2003 and 2014. In 8.8 percent of those suicides, there was evidence of chronic pain. And the percentage increased from 7.4 percent in 2003 to 10.2 percent in 2014. (Sep 12, 2018.)
Secondary Gain: in psychoanalytic theory, the advantage derived from a neurosis in addition to the primary gain of relief from anxiety or internal conflict. Advantages may include extra attention, sympathy, avoidance of work, and domination of others. Such gains are secondary in that they are derived from others’ reactions to the neurosis instead of from causal factors. They often prolong the neurosis and create resistance to therapy. American Psychology Association Dictionary of Psychology.
About Gwenn Herman, LCSW, DCSW
A social worker by training, Gwenn Herman has dedicated her career to offering much-needed hope to people with pain. Gwenn intimately understands their challenges, having lived with chronic pain for more than two decades as the result of a car accident.
Gwenn has developed an evidence-based support group model, one that enables participants to harness their own innate healing abilities, take a more active role in their health care, and improve their overall quality of life. In 2016, Pain Connection joined forces with U.S. Pain Foundation and has continued to expand its offerings.
October National Health Observances: Health Literacy, Breast Cancer, and Health Care Quality!
Posted on September 27, 2021 by ODPHP
Each month we feature select National Health Observances (NHOs) that align with our mission to improve health across the United States. In October we’re raising awareness about health literacy, breast cancer, and health care quality.
To make it easy for you to help spread the word, we’ve pulled together some resources you can use to promote these NHOs. We hope you’ll help us advocate for better health!
Health Literacy Month The Institute of Healthcare Advancement sponsors Health Literacy Month in October to integrate and expand the mission of health literacy. Check out our health literacy resources for health professionals to find strategies for sharing health information in ways that everyone can understand and use. And be sure to share our MyHealthfinder tool to connect people with easy-to-understand information based on health literacy best practices. You can also take a look at our custom Healthy People 2030 health literacy objective list to learn about efforts to improve health literacy on the national level.
I start my predoctoral internship today, which is one of my last requirements before graduating with my doctorate in Clinical Psychology. I’ve wanted to be a clinical psychologist since I was 16 years old. I’ve never wanted anything as badly as I’ve wanted this. It used to scare me how badly I wanted this.
There have been so many moments over the last five years where I’ve doubted myself, doubted my clinical skills, doubted my ability to finish my graduate program, etc. Being a graduate student is incredibly difficult but being a graduate student with chronic pain/illness is a whole other ball game.
While I’ve been in pain almost every single day since April of 2015, I was not officially diagnosed with fibromyalgia until April of 2019. There were so many days over the last five years when I woke up and just wanted to immediately crawl back into bed. There were so many days where I was so physically and mentally drained. There were plenty of days in which I had to compartmentalize and do everything in my power so I could somewhat manage my pain (I was usually unsuccessful) before seeing clients all day.
There were an endless number of days in which I sat in my own therapist’s office and sobbed because I didn’t know how to do this. I didn’t know how to be the future psychologist I wanted to be while also navigating my chronic pain. For the last five years, I didn’t even think I could get through the next minute, let alone hour, day, week, or month in that much pain while also working on my dissertation, seeing clients, attending classes, completing coursework, babysitting, and trying to maintain somewhat of a social life.
On my worst days, I screamed into pillows, threw pillows against my bedroom wall, and sobbed on my bedroom floor until I eventually picked myself back up. On those days, I thought about my 16-year-old self who wanted this so badly. There were so many things she was still figuring out, but she got this one thing exactly right.
As a 16-year-old, I sometimes spent Friday nights in my childhood bedroom thinking of all the children and adolescents in the world who were feeling misunderstood, invisible, alone, etc. and who were struggling with mental health issues but didn’t have anyone they could talk to. Just thinking of them made me cry.
On my worst days, I think about my clients who are far more resilient than I will ever be. One of my clients recently told me that she enjoyed our sessions because for the first time, she had someone she could talk to. In that moment, I thought about all those nights long ago and how this is exactly what I dreamed of.
I’m especially grateful to my friends who have seen me fall apart over and over and over again and who still love me despite that. The last five years have been especially demanding, but I still want this as badly as I did all those years ago. My entire life changed at 16 when I decided I wanted to be a clinical psychologist and I will be forever grateful for that.
Sandra Alami was born and raised in Los Angeles, California. She is a member of the chronic pain/illness community as she has fibromyalgia. She moved to Arlington, Virginia in September of 2016 to begin her graduate program. She is currently working on receiving her PsyD in Clinical Psychology. Upon graduation and licensure, Sandra hopes to work with children and adolescents in a community mental health setting. She also hopes to advocate for those with chronic pain/illness as she understands firsthand how challenging it is to live with an invisible illness.
Many thoughts are filling my mind at this early hour (2:00a.m.) on this first day of 2021’s October. From the pandemic to a lifetime of losses/gains, to what “home” really means. Like most others, I have lived in many places. A total of 16 dwellings, across 3 states, over a span of almost 67 years. This current home is the longest I have ever lived anywhere. Yet, as I contemplate the changes that have occurred in the past 27 years, this house/property are not quite the “same” home as when I first moved in.
Neither is this body the same “home” that I was born with; yet, it is the one habitable abode that has been a permanent dwelling for me. Within each age-n-stage of Life, changes have taken place in this “body-home”. Not all of them have been pleasant, nor easily adapted to.
I am “me” even though “I” have changed countless times in my lifetime. “I” take “me” everywhere I go; yet, the “I” who is “me” today is different from the “I” who dwelled in her parents’ North Carolina home for 15 years. Nor am “I” the same as when I moved to Gainesville 27 years ago. The “home” of this body that “I” reside within has been continually changing, and “I” have, to the best of my abilities, adapted accordingly, just as but not quite as easily as the house where I reside has been adapted through those years too, to suit our desires/needs.
This idea of “body-home” is a bit different from the building I refer to as “home”. I feel “at home” inside my own skin regardless of where I am in the world. Regardless of how often the indwelling “I” has adapted to the physical changes, “I” eventually feel “at home” again. Adaptation requires time … and willingness. To feel “at home” means that I feel safe, free to be “me”/think my own thoughts/nurture my own beliefs/pursue my own interests.
Our “home” of Mother Earth is changing. So too is our “home” of neighborhood, city, state, nation. We no longer feel safe, thanks in large part to the pandemic, which has affected every aspect of our “home life”, from world politics to space exploration, from the inner sanctum of our thoughts to the public platform of day-to-day living. Adjustment seems impossible, regardless of the degree of our individual/collective willingness.
And that makes each of us feel less “at home” with one another … and, perhaps just a wee bit alien inside our own skin. “I” sometimes do not recognize “home”, in much the same way that I am taken by surprise when I catch a glimpse of my old body in the bathroom mirror. Where did that 100 pound young woman go, who moved into this house 27 years ago???? Where is “home” when invisible threat is everywhere, surrounding us? How do we adapt? How do we feel “at home” amidst such universal change?
There are no easy answers, I’m sorry to say. There are, however, ways/choices/methods by which we each can indeed help self/one another feel more “at home” inside our own skin. I cannot create a safe “home” for anyone else. I can only do my best to be “safe, at home” inside my own skin. If I cannot feel safe with me, I will not be able to feel safe with anyone else or anywhere else.
To better manage my pain (physical/mental/emotional/spiritual), I must first acknowledge the pain. Stuffing “monsters” under the bed does not get rid of the “monsters”. I must name them to tame them! By naming them, I separate myself from them. Arthritis may be a condition of this aging physical form, yet it is not part of the “I” who indwells the body. Arthritis may limit my physical range of motion, yet my mind can carry my mental/spiritual self into realms beyond the reach of Arthritis. I can feel at home in an ever-changing body, despite the normal “monsters” of Life. I just have to adjust my perspective … again/again/again . (I can do that!)
Invisible, abnormal “monsters” (viruses, attitudes, random acts of violence) — we name them every day, and hear their many names with every news report. Yet, where is the taming????
Have we placed the responsibility of taming such abnormal monsters into someone else’s hands? If, for example, we place full responsibility for self’s own safety into the hands of The Authorities, yet neglect to do what we can to be a safe place for self/others … . If we demand of others what we ourselves are not willing to do … . If we blame instead of name … . If we shame instead of tame … . If “I” am not “at home” with my own self, how can I expect anyone else to be?
The author/psychologist Brene Brown states: “… to be open-minded … to listen with desire to learn more about the other person’s perspective …”, to say “Tell me more.” … [is] one of the most courageous things to say in an uncomfortable conversation. … And then we have to listen. Really listen. Listen to understand … in the same way we want to be understood.”
To feel “at home” despite all the external/internal changes unfolding continuously ~ what better goal to pursue than that? If “I” do not feel that “I” truly belong inside this often painful body, in this continually changing house, in this evolving neighborhood/city/state/nation … if “I” am not “at home” here/now, a safe place for self/others, then the “monsters” have won.
I am willing to keep adjusting my perspective. I am naming/taming my own “monsters”. I am “home” (to the best of my ability). It is my prayer that you feel “at home” too! THIS WEEK’S CHALLENGE:
Who said: ” … most individuals … simply faced up to the complications of emotions and life. They coped. … We do know that if problems have lasted for more than a month … [they] probably aren’t going to remit spontaneously. … But mental health is the most inexact of sciences. Different things work for different people. Even if a pattern of familiar symptoms appears, if it isn’t causing impairment, it isn’t a disorder. … If you’re OK, it’s OK.”
Looking forward to this afternoon’s Group session at the SenCen!
Stay safe. Stay kind. Stay curious. “Home” should not be dull-n-boring, eh?
It could not have been better had Hollywood orchestrated the arrival — Autumn arrived and with apropos cooler/drier conditions. The climatic change has generated a delightful ripple-effect of “better” ta-dah!
Lively closeup of falling autumn leaves with vibrant backlight from the setting sun
No magic cure, however. I am still dealing with the back pain. Improved weather conditions simply makes the back pain a wee bit easier to tolerate. There is measurable improvement with the back issue. I can stand up/sit down without yelping/crying. The recliner and cane are likely going to be permanent partners in my future, along with the exercises/analgesics.
I will NOT be facilitating today’s meeting, unfortunately. However, I do plan on/look forward to being more ambulatory soon. Perhaps today I will take a test drive around the neighborhood. If that goes well, I will gradually expand my boundaries. Just thinking about this one small return of Something Normal is enough to make me smile!
Multi-Ethnic Group Of People Holding The Word Thank You
Measureless gratitude/appreciation to each of you who sent “get well soon” messages/cards, and the delivery to my door/phone/computer of many helpful items/offers to do more. You surrounded me with prayers-n-care — the best “medicine” ever!
A big SHOUT OUT to my husband for all the extra work he has had to do in the meantime. The cats/turtles/I are very grateful!
Two books I highly recommend:1. “Pain Free ~ A revolutionary method for stopping chronic pain”, by Pete Egoscue, with Roger Gittines.
a butterfly leans on a woman’s hand
The authors explain the brain/body partnership in easy-to-understand terms, and offer helpful suggestions for exercises that will indeed assist in bringing relief to the area of insult. They also recommend that you keep a journal, so that you have an overview of your progress. “What you see, you can change.” Just as in resolving brain-files, when we see our personal patterns, we begin to reclaim our personal power/true responsibility in creating resolution.
2. “Pain: the science of suffering”, by Patrick Wall.
Wall reminds us that “the pattern of response varies from person to person, and within an individual it varies from one painful episode to another.” This seems like a Common Sense and therefore needless statement. Yet, it remains necessary to remind ourselves/others of this truth.
“Every sensible surgical patient has good reason to be fearful, anxious and depressed. The intensity of these feelings will affect the intensity of the pain. No amount of psychotherapy or drug therapy will abolish these entirely reasonable emotions, but they help.”
Both these books address the importance of remembering that the individual person remains unique within the confines of their personal pain. There is no one-size-fits-all solution to anything. Everything should be custom-fit to meet the individual situation/ability/circumstances. In other words, the better acquainted you are with your brain/body and mind/spirit, the better partner you are to yourself in dealing with Life’s challenges. Ta-dah!
In recruiting self as a best-partner in one’s own health/well-being/pain management, stretching our neurons toward a broader perspective/increased awareness remains an important “tool”.
THIS WEEK’S CHALLENGE, then, comes in the form of statements versus questions. After you read the following few lines, and if you are inclined to do so, please share (if only with me) your broader perspective on the subject.
Up until 1937, California state law permitted slave-labor auctions … that allowed white people to buy Native American children as ‘apprentices’ and to ‘bid’ on Native Americans who were declared ‘vagrant’ and to oblige them to work off the cost of the bid.
Which means that I am only one generation removed from that era of slavery. My parents would have been old enough to have been in the midst of it. My grandfather could have been “obliged” to have been so apprenticed.
Step into the shoes of the second/third generations removed from direct experience, and the perspective of Life as it was “back then” becomes much further removed from personal awareness. Yet, the generational inheritance of unresolved brain-files remains a very real phenomenon. What happened in the Past does not remain in the Past. Through time and distance, resolution becomes more difficult. Understanding remains difficult, if not impossible, without personal experience.
Who among us is willing to step back in time and “wear” such an experience? How can we expect anyone to fully understand our personal pain, when Life itself is so mysteriously personal/personalized?
Silhouette of a woman jumping with her hands raised and broken chains at meadow autumn sunset
Which is where the term “mercy” enters into the equation of pain-management (brain/body, mind/spirit partnership). In the original Hebrew, the word “mercy” has a long but elegant meaning: “Come, Lord ~ wear me and my life as if I am you. Know me, all the way back to First Ancestor and all the way forward to Last. Know me to that fullness, and teach me know myself and you in like manner.”
Tired African American office worker massaging neck suffering from chronic muscular pain sitting long hours in uncomfortable position. Concept of incorrect posture, inactive sedentary lifestyle
Could it be that “pain management” is part of “self awareness”? Is it possible to heal the past (that is, resolve brain-files) by way of getting better acquainted with the fullness of one’s own self? Mercy may be a goal too vast to ever achieve in the short span of one human lifetime; yet, it remains a most worthy and worthwhile goal to work toward.
AI (Artificial Intelligence) concept. Contents concept. Social networking service. Streaming video. communication network.
Stay safe. Stay kind. Stay as full of mercy as is humanly possible, toward self/others.
People protesting together and peaceful Protest group and protester unity and diversity partnership as heart hands in a fist of diverse nonviolent resistance symbol of justice and fighting for a good cause.
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