The Mythology (and reality) of Chronic Pain

Thanks to about.com's Chronic Pain newsletter for the link(www.cssa-inc.org) to this article.

Bankruptcies Of The Heart:
Secondary Losses From Disabling Chronic Pain


Summary of paper presented by Marcia E. Bedard, PhD, at the 1998 Society for Disability Studies Annual Meeting


My current research, which I have summarized here, is focused on the theory of "secondary gain" as it applies to chronic illness, and specifically chronic pain. The basic idea behind this theory is that chronic pain is psychological and persists only because the person suffering from it enjoys one or more "rewards" that accrue from their pain. These so-called "rewards" may be emotional, such as sympathy – or monetary, such as disability payments. Either type of "gain," is said to reinforce the pain, causing partial or complete disability. Although this concept originated with Freud decades ago it has never been rigorously examined. Given the prevalence with which it is applied to persons disabled by chronic pain though, we must question its validity until it has been scientifically proven to hold true. In the interim, we need to take into account the numerous "secondary losses" brought about by chronic pain as well.

For more than 30 years now, the majority of psychologists have been shifting their emphasis toward treating chronic pain as a perceptual and psychological phenomenon rather than a true medical problem. One of the major theorists in this field was Wilmer Fordyce, who developed an influential social-learning model of chronic pain based on behavioralism about 20 years ago. Fordyce believed that pain is behavior designed to protect oneself or solicit aid and that pain increases, i.e., this behavior is strengthened, when followed by desirable consequences. Unlike many of his predecessors who believed chronic pain was purely psychogenic in origin, Fordyce believed that all pain began as acute pain from actual tissue injury and under normal conditions, the injury healed in a certain period of time. However, Fordyce argued that if pain persisted beyond the normal healing time in an environment with secondary gains, the pain would become chronic. He gave as examples of secondary gains, or "desirable consequences" of pain the following factors that he believed reinforced pain and disability.


The Four Most Commonly Referenced Secondary Gains

The myth is that persons disabled by chronic pain generally enjoy:

1) attention and sympathy from family, friends, and physicians
2) release from task responsibilities at home and at work
3) narcotic medications presumed to induce constant euphoria
4) monetary compensation which approximates actual wages

The Four Least Commonly Recognized Secondary Losses

The reality is that persons disabled by chronic pain generally endure:

1) anger/trivialization/rejection by family, friends, and physicians
2) complicated/frustrating tasks dealing with new bureaucracies
3) agonizing pain without medication; unpleasant side effects with medication
4) denial of disability benefits to which they are legally entitled


My thesis is this: not only is psychogenic chronic pain rare, but more importantly, few people disabled by chronic pain regularly receive secondary gains. My evidence for this assertion comes from several sources: literature cited in the paper I presented at the 1998 Annual Meeting of the Society for Disability Studies (SDS); information about personal experiences sent to me by hundreds of chronic pain patients, as well as physicians and psychologists who specialize in treating chronic pain via numerous Internet lists I subscribe to and websites I monitor; and finally, my own experience over the past six years as a chronic pain patient.

Attention and sympathy from family, friends, and physicians is, sadly, in short supply for chronic pain patients. The wide range of family problems experienced by these patients include, but are not limited to: guilt over not being able to carry one's fair share of domestic tasks; anger at family members who deny the reality and/or severity of the patient's pain; frustration because the pain is so great it makes playing with one's children or sexual intimacy with one's partner torturous or impossible; and anxiety about the financial strain that stems inevitably from disabling chronic pain. Given that nearly every book or magazine dealing with chronic pain has a section on coping with these and other family problems, it is apparent that family attention and sympathy are not as abundant as we are led to believe by secondary gain theorists. We must also not forget that many chronic pain patients have no family, or none nearby, or their families deny or trivialize their pain and disability. Denial, trivialization, and eventual abandonment are also common reactions of friends or co-workers. The loss of former friends is another emotionally painful aspect of disabling chronic pain.

Attention and sympathy from physicians may be absent at the outset for chronic pain patients, but if not, it generally wanes as the patient fails to respond to one after another medical interventions, leaving most doctors feeling frustrated and helpless. Patients with incurable, irreversible, and progressive conditions, such as degenerative disk and joint disease, may have a difficult time even finding a doctor who will take them as a patient. Consequently, many chronic pain patients are literally "fired" by their treating physicians a year or so after numerous painful and invasive treatments have been tried and failed, and left on their own to try and find another doctor. Unless such patients are able to find a physician who can actually help them control their pain, they are forced to live an unbelievably miserable existence that all too frequently ends in suicide.

The second most common secondary gain is release from task responsibilities at home and work. It may be that those living with spouses or significant others are relieved from some or all of their domestic chores some or all of the time, but I question whether this is perceived as a "reward" by most persons disabled by chronic pain. In my own experience and research, the guilt of watching loved ones at home and colleagues at work become overburdened by these extra tasks is hardly rewarding and takes a heavy toll on one's self-esteem and sense of self-worth. Furthermore, as time goes by, resentment toward the disabled person generally increases among those picking up the slack, increasing interpersonal friction. Any release from former task responsibilities is also offset by the increase in new task responsibilities on becoming disabled. There are numerous forms to be filled out and reports to be completed for the Americans with Disabilities Act (ADA), leaves of absence and state disability insurance (SDI). If the chronic pain resulted from a work-related illness or injury, there is the bureaucratic morass of worker's compensation to navigate. And if the disability lasts six months or more, there is the process of applying for Social Security Disability Insurance (SSDI). The amount of paperwork and reports varies, but in my own case, which was relatively simple, there were hundreds of pages of forms and reports I had to submit over the two years it took just to get my SSDI approved, and that was with the help of an attorney. This, however, was nothing compared to what I went through with my group long-term disability (LTD) insurance. The forms, reports, and correspondence on that claim fills an entire drawer of my filing cabinet, and that claim is still unsettled.

Narcotic medications are the third most commonly referenced secondary gain. The fact that they are considered a gain at all is telling – it is obviously presumed that they induce euphoria, yet any pain patient who has taken them regularly will tell you that not only do they do nothing but take away the pain so one feels relatively normal for awhile, they also have extremely unpleasant side effects. Yet although 34 million Americans suffer from chronic pain and most are significantly disabled by it, only a small minority receive any type of narcotic medications for pain relief and these are usually inadequate to relieve the pain – a situation which frequently leads to suicide or requests for physician-assisted suicide. The irony here is that in many cases these are the only medications that will allow the patient to return to part-time or full-time work.

The fourth commonly referenced secondary gain is the supposed monetary compensation which approximates actual wages that persons disabled by chronic pain receive. If this fallacy were not so tragic, it would be laughable, because of all the secondary losses emanating from disabling chronic pain, the economic losses are utterly devastating. Even if one is fortunate enough to have medical insurance, there are numerous expenses detailed in my paper that are not covered by any type of insurance, nor are they even tax-deductible. So where did the idea come from that work-disabled persons "have it made" financially? I think it is because there are ostensibly four different types of "safety nets" when one becomes disabled: state disability insurance (SDI), worker's compensation (WC), Social Security Disability Insurance (SSDI), and group or private long-term disability (LTD) insurance. LTD insurance is a type of coverage which very few people have - primarily highly-paid professionals – yet this is the only kind of insurance benefit that ever approximates one's pre-disability income, generally paying half to two-thirds of the claimant's lost income as benefits. However, if the disability is from chronic pain, more often than not the claim for any type of benefits will be disputed and, in too many cases, denied, leaving the disabled person to face bankruptcy, poverty, and eventually homelessness unless one is exceptionally lucky. So common is it for persons disabled by chronic pain to be denied benefits to which they are legally entitled that numerous lists and websites have been established on the Internet solely for the purpose of providing information and support to those claimants wrongfully denied. To describe this situation as scandalous is an understatement, yet millions of American workers have been lulled into false security believing that if they should have the misfortune of becoming disabled, these safety nets will be there to cushion them from the full brunt of economic loss.

In summary, divorce, loss of career, financial ruin, homelessness, loss of friendships and social life, loss of physical mobility, the severe stress of protracted litigation, and in some cases physical disfigurement are just a few of the kinds of secondary losses commonly incurred by persons disabled by chronic pain. Obviously it is impossible to place a price tag on any one of these tragic losses. So the concept of secondary gain is put forward instead, turning the truth – the reality of the disabled person's existence – upside down. This is, in my estimation, nothing short of institutional moral larceny: a victim-blaming ploy that serves primarily to justify the reprehensible actions of insurance companies, opposing attorneys, and many of the private, county, state, and federal bureaucracies purporting to "assist" persons with disabilities. Secondary gain, or any other concept built on myths and stereotypes which contribute to ongoing discrimination against persons disabled by chronic pain needs to be exposed for what it is – unconscionable in a democratic society.

What is desperately needed at this point in time is a massive public education campaign regarding the enormous losses, tangible and intangible, that accompany disabling chronic pain including, but not limited to, bankruptcies of the heart.


Copyright © 1998 by Marcia E. Bedard, Ph.D., Women's Studies Program, California State University at Fresno