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

1. I worry all the time about whether the pain will end. (H)
2. I feel I can’t go on.
3. It’s terrible and I think it’s never going to get any better. (H)
4. It’s awful and I feel that it overwhelms me. (H)
5. I feel I can’t stand it anymore. (H)
6. I become afraid that the pain may get worse. (M)
7. I think of other painful experiences. (M)
8. I anxiously want the pain to go away. (R)
9. I can’t seem to keep it out of my mind. (R)
10. I keep thinking about how much it hurts. (R)
11. I keep thinking about how badly I want the pain to stop. (R)
12. There is nothing I can do to reduce the intensity of the pain. (H)
13. 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:

1. Quartana, Campbell & Adams, Pain Catastrophizing: a critical review, Expert Review of    Neurotherapeutics Volume 9, 2009
2. Ellis A.  Reason and Emotion in Psychotherapy. Lyle Stuart; NY, USA: 1962.
3. Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive Therapy of Depression. Guilford Press; NY, USA: 1979.
4. Chaves JF, Brown JM. Spontaneous cognitive strategies for the control of clinical pain and stress.  J Behav Med. 1987;10:263–276.
5. 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.
6. 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.)
7. 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.