Summary of a paper presented by Marcia E. Bedard 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
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
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
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 econdary
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)

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 predisability
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