In this and two subsequent columns, I will discuss the concept of secondary gain as it applies to disability. My goal is to revise a view I long embraced and, indeed, promulgated enthusiastically to students, house officers, and fellows. On many occasions in my teaching clinic, I stated that the concept of secondary gain in disability is misleading if not erroneous because what can be labeled as gain in reality represents loss. Sometimes I was even more dogmatic and said that secondary gain does not exist.
I have been off target in my views, misguided by an effort to develop a more fair-minded and compassionate approach to disability. In what I think will be a constructive effort at revisionism, I will advance another concept of secondary gain that, while nuanced, is hopefully more illuminating. I did not get the inspiration for another look at secondary gain from reading an article in a high-impact journal or hearing a lecture from a touted thought leader. Rather, I rethought my views during a piano concert by Leon Fleisher, a virtuoso with a troubled right hand.
Subjective Pain and Secondary Gain
Like virtually every rheumatologist I know, I have evaluated patients who seek disability despite minimal signs of arthritis or musculoskeletal disease. Some of these patients lack any objective findings by physical exam, X-ray, or laboratory tests. Nevertheless, they believe that their symptoms preclude employment. The origin of these ailments is mysterious. Patients with fibromyalgia, chronic fatigue syndrome, and whiplash injury are among this group, and deciding whether these patients should be considered for disability is both controversial and vexing. Lacking better explanation for the desire of these patients not to work, the term “secondary gain” is often used.
What is secondary gain? In common parlance, it refers to the benefits or advantages that can accrue from not working. These may include money, freedom from a demanding or boring job, and leisure time for enjoyable activities. All of these benefits are supposedly made better by knowing that a generous check will arrive in the mail every month to pay the bills.
For some patients, the situation is more complicated because secondary gain may represent a desire for control and leverage to pressure family for attention and care. This dynamic can even extend to the physician as pressure to recommend disability. Suffice it to say, physicians do not like this. Applying the term “secondary gain” to a patient can convey a negative sentiment, often accompanied by annoyance and condescension from the provider. It can also lead to a blame game, in which patients are blamed for their symptoms and desire for disability.
Not Everyone Gains
Clearly, there are patients with arthritis who want to work but have trouble on the job. Even if the jobs are tough and pay little, these people want to keep at it. There is little secondary gain in disability for these people. I can remember a man with a back stiffened with ankylosing spondylitis whose work involved climbing a ladder to stock merchandise in a hardware store. My patient loved his job and took pride in knowing the locations of wire brads and cotter pins on high-up shelves.
Although my patient had safely performed this job for more than twenty years, a new supervisor, afraid of the liability potential if my patient should fall from a ladder and shatter his spine, fired him. Given his physical condition, my patient could not find another job and reluctantly we put him on disability. My patient was bereft. He wanted to stock hardware, not fish for bass, and there was no gain for him.
There are also patients in terrible jobs who would rather sacrifice the usual benefits of work to avoid the stress, misery, or danger of their current job. For these patients, the “gains” reflect resignation and capitulation as much as anything else.
I had an uncertain approach to disability until I attended a lecture by a psychiatrist who researched chronic pain. I have listened to thousands of lectures in my career and dutifully record the CME hours for licensing and credentialing purposes. The evaluation forms for CME programs include questions inquiring whether the lecture was relevant to your practice and would influence the way you treat patients. To be nice to the lecturers and purveyors of CME, I usually put down a “3” or “4” out of “5” on the question about the influence on my treatment. In reality, it is unusual that I learn anything that will really alter what I do. The treatment of many conditions is relatively set and there are an increasing number of guidelines to provide a schema for care. Hearing a really new way of thinking about care is unusual.
The lecture by the psychiatrist was different. His ideas really changed my view because he questioned the concept of secondary gain, advocating a different language or idiom for the people seeking disability. To this scholar, some of the people seeking disability for “secondary gain” were actually experiencing a secondary loss. The sources of the loss were many: loss of pride and self-esteem, loss of human contact and engagement, and loss of tangible accomplishment and achievement. As the psychiatrist said, even with a regular check from the government, sitting at home can be an isolating and boring existence.
In this view, some patients who seek disability in the absence of physical limitation may have emotional limitation, with the request not to work emblematic of underlying psychological or characterologic disturbance. To the psychiatrist, the request for disability could be a symptom, a signal for help. While the idea of secondary gain can call forth resentment and derision, the idea of secondary loss calls forth sympathy and understanding.
And Not Everyone Loses
Having assimilated this viewpoint, I began to shift not only my practice but also my teaching. When one of the fellows evaluating a patient for disability would glibly say that the goal was secondary gain, I would challenge him, “Where is the gain?” The fellow would usually say, “The patient doesn’t have to work,” to which I would reply, “Would you exchange your job for a life on disability?” So far, no one has said “yes.”
In trying to shift the language of disability, I overcompensated and missed an important aspect of secondary gain. I accepted the negative connotation of secondary gain and wanted to eliminate it rather than understand it. As I have come to realize, secondary gain is a spectrum and comes in positive and negative forms. Rather than trying to nullify the concept, I should have expanded it to comprehend how patients and providers respond to losses that come with illness.
As I will discuss in a future column, providers can measure loss far better than gain and easily miss the success of those individuals with illness who transform their physical disability into a life of achievement and satisfaction and, yes, a very positive type of secondary gain.
Dr. Pisetsky is physician editor of The Rheumatologist and professor of medicine and immunology at Duke University Medical Center in Durham, N.C.