Ina* was 23 years old when she received her diagnosis and subsequent surgical treatment of Endometriosis, the intensely painful disorder where endometrial tissue implants itself on organs outside of the uterus. Endometriosis is a disease most often characterized by pervasive pelvic pain, although, symptoms are varied and ubiquitous. It is one of those conditions that lend itself to under-treatment, misdiagnosis, and under-reporting for an assorted array of reasons. Among those reasons are it persists without a known cause of the condition and certainty of the disease comes only from laparoscopic surgery. The day Ina had her surgery and the closest to a definitive diagnosis of the disorder, she received a call from her sister. Ina explained to her sister that the surgeon removed a fibroid, scar tissue, chocolate cyst, and performed a presacral neurectomy, a surgical removal of the presacral nerves that transmit pain signals from the uterus to the brain, reserved for patients that experience the most severe form of pelvic pain. Ina’s sister replied: “Wow, so you actually were sick. You mean the doctor actually found something?” When Ina had to undergo a second surgery, there were no further calls from her sister regarding her health—the very thing that had dominated her life for the last four years. What does it mean to be legitimately sick? Can we move beyond the Talcott Parsons idea of the “sick role,” the notion that sickness is only legitimate for a period of time before patients are viewed as benefitting and rewarded for illness? What are the reasons for the stigma associated with pain, disability, and illness?
In her powerful and complex book, In the Kingdom of the Sick: A Social History of Chronic Illness in America, Laurie Edwards (2013) discusses the nexus of patient agency, blame, and opprobrium often assigned to those that exist in the category of the unwell. She raises several important points both historically and currently when it comes to societal acceptance of healthy and unhealthy. One such argument involves the idea of deserving and undeserving of affliction. When discussing the history of tuberculosis (TB) she looked at a creative writing piece from the early twentieth century, noting that certain patients were described as unusual “candidates” for a TB diagnosis because they were middle class, employed, married; and, therefore, deemed “undeserving” of having a disease (Edwards, 2013). Furthermore, she traces through the notion that the chronically ill are often pressured to do something that they are not currently doing to regain health. Edwards argues that in a world that esteems and touts youth, fitness, beauty, and achievement to be chronically ill is incompatible with societal norms. The consequences of these social conflicts are that patients are forced into a space that is both mental and physical. Responsibility falls to the individual to “manage” their pain. Patients with chronic pain are constantly required to validate their symptoms both internally and externally. (The very historical notion and view of chronic pain as a symptom and not a disease invokes this problem of validity.) More often than not, patients with chronic pain are expected to perform daily routines at the same pace and consistency as non-pained individuals without so much as a mention of suffering because to do so has the potential to be negatively labelled.
To expand the discussion of stigmatization and chronic pain, one has to look at the concept of fear and mortality. A fellow pain patient was undergoing surgical treatment for degenerative spondylolisthesis with spinal stenosis, a condition that caused widespread pain and weakness in the legs. In the same week, her friend was in the hospital giving birth. This pain patient remarked that all of their mutual friends visited her friend that had given birth, greeting her with cards and flowers; and, yet, no one visited her after her spinal surgery. Is it that pregnancy is gloriously life-affirming and pain and loss of mobility is on the other spectrum serving as a reminder of the fragility of life? Do we turn away from those that suffer with the latter because it prompts us to remember that our bodies are degenerative and provides for us a glimpse into the possibility of our own future? The political philosopher, Thomas Hobbes, stated that it is so innately given that man’s greatest desire is to escape death and that this certain motion of life is so profound men would relinquish some power and enter into commodious living with others to escape its consequences. Is there emotional avoidance of the people that fall into the category of the “chronic” because we inherently want to evade confronting the impeding experience of what is meant to languish in the state of the “chronic”? What is the other side of this coin? The philosopher, Friedrich Nietzsche argued that the one thing that is needed in life is to confront all the strengths and weaknesses of our own being. He suggests confronting all of the pains and joys of life as if they were to be returned to us daily to do again. He challenges us to speak our words and carry out our actions as if they were handed to us an innumerable amount of times in the same fashion. Perhaps, therein lies what we should see when we look at one another: the chronic is not a reminder of our own vulnerability, but as Nietzsche stated, of our “life as [we] now live it and have lived it [and we] will have to live once more” (1967).
Tell me your story. Has there been a time you felt stigmatized because of chronic pain?
*stories were used with permission from the individuals in this post but the names and ages were changed