By Alan Cocchetto, NCF Medical Director

From Fall 2014 Forum

The “Just Ask!” column is intended to act as a means for patients to inquire about issues related to the NCF’s research activities. This column is NOT intended to act as medical advice in any way, shape or form! The National CFIDS Foundation assumes no responsibilities for any action or treatment undertaken by readers. For medical advice, please consult your own personal healthcare providers

Q: Dear NCF, I have been ill for almost 20 years and am, quite frankly, sick of this disease and how I have been treated by medical professionals as well as acquaintances over the years. I have talked to others with this disease and it seems that we are all in the same boat. It really sickens me that for being this ill, this disease gets so little recognition, even among those in mainstream medicine who should know better. Am I all wet or are my observations on the money?
Signed: Sick and tired to death

A: I can assure you that these are very common thoughts and feelings among those who have had this for many, many years. When you have had something wrong for a long time, it is easy to make your own observations and to compare notes with others who, as you have stated, are in the same boat as you. Let me now discuss this from another perspective, a scientific perspective that references an actual medical journal.

There is an excellent paper that I certainly suggest you read in its entirety titled, “Suffering and the social construction of illness: The delegitimation of illness experience in Chronic Fatigue Syndrome.” This was written by a Harvard University professor and published in 1992. Two other Harvard physicians contributed to this work of which one was Dr. Anthony Komaroff who referred 50 of his 350 patients to the author for this particular study. In this paper, the author, Dr. Norma Ware, stated in the summary, “The author examines suffering engendered by the socially constituted nature of illness through the delegitimation of illness experience in Chronic Fatigue Syndrome. Cultural meanings of physical and mental illness are shown to be reflected in interactions with others to construct an illness reality in which Chronic Fatigue Syndrome is defined as either nonexistent or psychosomatic.

“Disconfirmation of the subjective experience of illness leads to suffering arising from the threatened stigma of psychological disorder, the alienation resulting from a decision to keep the illness secret, and the shame of being wrong in one’s definition of reality. Patients also develop strategies for contesting the definition of Chronic Fatigue Syndrome as not real. Delegitimation merits further exploration as a category for experience-near analysis of suffering in medical anthropology.”

The paper focuses on the suffering associated with delegitimation of CFS which is defined as the experience of having one’s perceptions and definitions of illness systematically disconfirmed. The author’s intent was to depict a set of words, experiences, and feelings that “run together” for individuals suffering from “CFS.”

In this study, Dr. Komaroff’s fifty CFS patients were interviewed as part of this research. These interviews were conducted over a period of 18 months and ended in the summer of 1990. It is hard to imagine but this vital work is 25 years old! The length of illness ranged from 1.5 to 25 years in duration with a mean length of illness for this sample as 5.7 years. The patient ages ranged from 23 to 66 years with a mean age of 39.

In defining CFS as “not real,” the experience of delegitimation highlighted the following. Two types of delegitimizing encounters appeared regularly. The first stems from the apparent insignificance of the symptoms. The perceptions of the trivialization of symptoms by others converge for sufferers in the thematic phrase “You’re tired? We’re all tired! So what!” The second, and more damaging, delegitimizing experience for CFS patients is embodied in physicians’ definition of the illness as psychosomatic or “all in your head.” In interviewer’s reports, the first is that no observable evidence of disease in the form of clinical signs or laboratory findings can be found. The second is the fact that the illness has yet to be fully accepted as a diagnostic entity in the standard professional nosology. Study participants repeatedly complained of being disbelieved or not taken seriously because they “don’t look sick.” In fact, patients are often told that they “look great!”

According to this author, part of the etiological controversy that surrounds CFS stems from the fact that “the illness has yet to be reliably associated with any identifiable organic pathology. Laboratory tests undertaken for diagnostic purposes, therefore, prove consistently unsatisfying.” CFS patients have typically undergone extensive testing ordered by physicians. The author states, “When the results of every test come back negative, the conclusion is that there is nothing physically wrong.”

Furthermore, the author stated, “For Chronic Fatigue Syndrome sufferers, the lack of recognition of the illness has meant that physicians could not definitively diagnose their condition. Many experienced this as betrayal by the medical profession and responded by consulting another (sometimes many other) doctors in search of an explanation for their distress. When this effort failed, they turned to alternative health care providers or fell back on various illness management strategies of their own devising. Thus, the absence of observable evidence of pathology, together with the ambiguous status of the illness in professional medicine, precluded the possibility of a physical diagnosis for many Chronic Fatigue Syndrome sufferers. And if an illness is not physical, it must, it follows, be mental. The cause of the symptoms was therefore often hypothesized to be depression, stress, or some other form of psychological disturbance.”

This study found that 90% of those interviewed reported delegitimizing experiences. The illness reality that emerges is one where CFS sufferers repeatedly find themselves judged to be either not sick or suffering from an imaginary illness. In either case, their complaints and their experience are discounted as being “not real.” As such, the experience of being repeatedly disconfirmed in their definition of reality led many to self-doubt. The suffering of self-doubt thus lies in the prospect of adding the burden of a stigmatized identity to that of living with a chronic illness that is severely debilitating, basically untreatable, and of questionable authenticity in the eyes of others. This causes ) some patients to retreat into secrecy. Rather than expose themselves to the pain of being disbelieved, those who opt for secrecy actively try to hide the fact that they are sick. These patients make great efforts to “pass” as healthy by struggling to hold onto jobs, to lead seemingly normal social lives, or simply to continue to perform the routine functions of daily living. For these individuals, dissembling, as difficult and demanding as it is, seems preferable to the risk of being disconfirmed in their experience of their illness.

In explaining their reasons for choosing secrecy, study participants cited the awkwardness and embarrassment of trying to explain to someone that they have an illness whose symptoms are illdefined, that has no “real” name or known cause, and that (at least at the time) most people have never heard of. As more than one person put it, it would be easier in more ways to have some serious but immediately recognizable disease like cancer:

• “As we have seen, the lack of recognition of Chronic Fatigue Syndrome meant that many patients found themselves consulting physician after physician in the search for a diagnosis — often over months or even years. The failure of medical professionals to name their condition left patients feeling not only betrayed but also with no means of coping. Without a diagnosis, there was no treatment - no way of fighting the illness. Not knowing whether what they had was life threatening or what course it would take made life decisions and planning for the future impossible. The sense of paralysis that ensued was conveyed especially clearly by one individual, who also contrasted the experience of Chronic Fatigue Syndrome to that of having cancer: It would be easier in many ways if someone was to say to me, ‘OK. We’ve found out what’s wrong with you. You’ve got a tumor the size of a grapefruit and you’ve got two years to live.’ OK. Now I know. That’s what it is. I can get my affairs in order and sell my long-term bonds. OK. This is it. We pay off the car. We take a trip to Bermuda. I don’t have to wonder what it is that I’m going to do with the rest of my life’.”

Of the various forms of suffering that experiences of delegitimation can engender, none was as devastating for this group as the humiliation that resulted from having their subjective perceptions and sensations of illness either trivialized or dismissed as psychosomatic. Other authors have written of the potential for shame in the medical encounter when illness is experienced by the sick person as a deficit or when the vulnerability of the patient is overlooked by the physician. The shame of CFS sufferers, however, stems not from the fact of having an illness but from being told that they do not. Their shame is the shame of being wrong about the nature of reality.

The author concludes as follows: “The reality constructed for sufferers of Chronic Fatigue Syndrome through delegitimizing experiences is that their illness is not ‘real’ at all but rather a fabrication based either on needless exaggeration of everyday complaints (in which case they are malingerers) or on the perception of imaginary symptoms (in which case they are ‘crazy’). In either case, the self-doubt and the threat of stigma, the secrecy and the social isolation that results, the psychological paralysis induced by the ambiguities of the illness, and the shame of being wrong about ‘really’ being sick all contribute to the psychic suffering of the chronic fatigue victim.”

So, to “Sick and tired to death”, your thoughts, feelings and perceptions of this disease are right on the money! I hope that this resource acts to confirm and reaffirm your disease reality. Thanks for writing in.

Reference:

Suffering and the social construction of illness: The delegitimation of illness experience in Chronic Fatigue Syndrome; Ware NC; Med Anthro Qrt 6(4): 347-361

Notes

1. This article is available from the National CFIDS Foundation
   
   
2. For our own patient cohort that has been exten sively studied by various research studies the NCF has funded, we have removed the etiological controversy for this disease since we now have established an identifiable organic pathology. The NCF identified, in its patients, the presence of specific internalized radionuclides coupled to their proven severe chromosomal abnormalities to finally establish an extremely serious organic pathology. This is our personal legitimization. This pathology is associated with specific changes to the bone marrow at the level of the stem cell/CD19 B-cell compartment. It ultimately leads to the development of abnormal/malignant cell generation that is associated with primary leukemias/lymphomas as well as secondary tumors that directly result from this CFIDS/ ME disease process. ■