This blog is a review of a review article published on Medscape (http://www.medscape.com/viewarticle/810602) titled: “A Narrative Review of the Impact of Disbelief on Chronic Pain.” (originally published in Pain Manag Nurs. 2013;14(3):161-171.)

{NOTE: The references I make within my review are to try to preserve the integrity of the original citations within the original article. I have not provided the actual references in this blog for the sake of brevity  – to further research my review of the original review, please see the original Medscape article and/or the original article in the Journal cited above.}

Firstly, I must offer kudos to the professionals that wrote the articles reviewed in the article – and to the authors of this review – for pointing out the bias, shortcomings and discrimination that occurs by medical professionals, friends, coworkers and family members all over the world when in come to the issue of pain. The focus of the articles reviewed were primarily female patients, but men certainly are not exempt from the treatment this review discusses.

Just last week, I sat in an office at Massachusetts General Hospital for over an hour, where a rather large poster exclaiming “pain is the 5th vital sign,” and how healthcare works must ask and patients must “speak up” in if they are in pain because they “deserve treatment.” HA. What a joke.  No one asked me about my pain. Did anyone there really care?  Doubt it.

Articles for the review published by Medscape were obtained in the usual way – though a search of the standard, well-known, world-wide databases of peer-reviewed medical journal articles. No Dr. Oz or WebMD rhetoric here. The main themes focused upon by the reviewers were:

1) the effect of feeling stigmatized – feeling “deeply discredited” (Goffman, 1963)  by not having one’s pain believed (via actual or perceived encounters). Sources of stigma include the medical professions, employers, the general public, family, friends and spouses

2) the experience of isolation (Walker, Sofaer, and Holloway, 2006; Clarke and Iphofen, 2008) because of disbelief of others that the patient actually experiences pain or that the person actually has a medical condition; and

3) emotional distress suffered because of the response received from healthcare providers to the patients’ admission that they were in pain (Allcock et al., 2007; Holloway et al., 2007, and many others)

The literature cited noted that when a patient says he is in pain, it exists (I am paraphrasing here).  It was noted that to have one’s pain disbelieved by one’s own physician is the failure to accept the account of patient as truthful. This opens up the doctor-patient relationship to distrust, suspicion, supposition and stereotyping of ALL kinds far too numerous to list here.

As far back as 1992 (before all the hoopla over the fear of the misuse of opiates was taking up loads of bandwidth, media attention and research monies)  a concept known as “delegitimization” was discussed in the literature by Norma Ware. She referred to studies of anthropologist Arthur Kleinman, who defined delegitimization as “the experience of having one’s perceptions of an illness systematically disconfirmed.” The Medscape authors point out that delegitimization and disbelief are not necessarily synonymous, as delegitimization can occur unintentionally, whereas disbelief is just that – disbelief.  The focus of the review article is solely on disbelief.

[Wow. How many of us that suffer from chronic medical problems have experienced THIS? Does it help to know we are not alone? Do we wish this Medscape article I am reviewing was published in the New England Journal of Medicine or JAMA and not some obscure nursing journal. HELL YES! Perhaps, then the medical community would sit up and take notice.]

Often, patients complaints of pain are chronicled by doctors as “psychological” or “trivial.”

It is noted that often the doctors disbelief of the patient’s pain compromises the accuracy of the pain assessment (which is supposed to take place as part of most exams, but my experience has been that the topic is rarely brought up at all).

Although the authors of the instant article wanted to include a complete social context for the patients experience of disbelief, i.e.:  within their workplace, among friends, and with family. The focus of the historical literature is on the consequences surrounding the disbelief of chronic pain and the ensuing implications this may have for health care professionals, and thus, the majority of the article maintains this focus.

[This is not entirely a bad thing – as we all know – if our docs don’t believe us, it is likely not many other folks will either. Negative attitudes about a patients chromic pain are often recorded in the person’s permanent medical record – which are passed doctor to doctor, and practice to practice, thus predisposing the patient to being looked upon with a raised eyebrow by any new healthcare professional from which she may seek treatment, often before she is even seen.]

As those of us with invisible, chronic medical issues can attest, one often is made to feel that you MUST have a real and legitimate (and visible) physical pathology.  The review article points out that the due to the lack of physical evidence, a psychological cause is often suggested. The immediate thought is the “if the cause is not in the body it must be in the mind (Lillirank, 2003),” leading the patients to be thought of as lazy or crazy. [Nice. I can just image what my doctors must think of me.]

One of the most interesting discussions I found in this review article was that of the effect of disbelief on self-identity. Numerous studies over the past decade worldwide support the profound impact that symptom disbelief has on identity and esteem. (Please see the original article, referenced above, for the citations to these studies.) Disbelief of chronic pain is prevalent amongst male medical professionals – researchers received some incredibly horrifying responses to queries about male doctors’ female chronic pain patients. Women were described as “fat and tearful.” attention-seeking, and “likely to have a psychological component” to their complaints of pain.” Researchers found that women were aware of these perceptions and to try to preserve a positive identity, often sought to underplay or overplay their pain complaints. Both strategies, however, fail to lead to successful and proper treatment for their condition. (The review also noted that men also experience negative treatment from their doctors upon self-reporting of chronic pain, but those studies oddly seemed limited only to veterans.)

Isolation as a result of being a chronic pain patient is far-reaching and invades every aspect of a person’s life. It is overwhelming to image how one doctor’s negativity and ignorance can proliferate throughout a person’s entire life as a virus, leaving that life in ruins.  Patients reported loss in “areas such as work, finance, relationships, identity, and hope.”  One participant captured the feeling quite well:  “you’re stuck at home, you become a prisoner in your own home. Your life is the pain is your cell” [I couldn’t have said it better myself.]

Often close friendships are lost, further physically and socially isolating the individual. We all know that pain restricts activity, which subsequently isolates people.  A male participant in the Walker et al. study sadly described how  he lost his relationship with his wife, stating: “my wife even turned on me, thinking it was all put on…from that point on I’ve just lived on my own.”

The lack of a medical diagnosis – a name for the pain and suffering the patient experiences daily – helps to keep the patient silent out of fear of negative judgement by others.  [This is why when we finally GET a diagnosis –  we are happy – we have been validated!]

It is so much harder to deal with daily pain without an emotional connection to others. As stated in the Medscape review,  “individuals subsequently suffer not only the pain itself but also the isolation caused by the hidden nature of pain. This unseen pain hides from others, what is for many, a major part of their lives.” This statement is a sad and pathetic testament to the lives that many of us are forced to live due to the insensitivity of the medical professionals we must turn to for help. As mentioned earlier, the medical profession is even more sensitive to anyone claiming “pain”‘ as a symptom due to the plethora of addicts misusing some of the drugs that unfortunately, some people actually DO need for their conditions. The Medscape review is full of examples of poor treatment of patients by medical staff, derogatory name calling (including “hypochondriac”, “drug addict”, “liars”), and the effects of the stigma suffered by these patients.

After experiencing disbelief, it has been reported that chronic pain patients often experience an even deeper depression, and some contemplate suicide. Oddly, there were studies that sought to refute this  – I found that odd. It seemed as if the medical profession didn’t want to take responsibility for confounding a condition that they had created and ignored.

Here is another brilliant quote form the Medscape review: “A failed battle to convince the health professional of the legitimacy of one’s illness can have painful consequences for the individual.” [I would have used MUCH stronger language than “painful consequences…”] Simply put, patients are left angry and hurt when they fail to receive a diagnosis. Often, those that pursue second opinions from other specialists due to the disbelief of the original physician leads to additional disbelief because of the refusal or hesitation of the first physician to provide a diagnosis, leaving the second-opinion doc to be “suspicious.” And thus, the cycle of stigma continues, and the effect on the patient becomes more profound.

[Does this sound all to familiar to anyone besides me?]

As part of the conclusion, the Medscape review article provided these “Recommendations to Health Care Professionals:”

1) Professionals need to be aware that using psychologic explanations of pain can be experienced as a denial of the individual’s pain. Caution must be exercised when using psychologic models with patients.
2) It is essential to be aware of the tension that patients can experience in the expression of their pain. Professionals might seek to openly invite patients to express their pain. This could form part of a regular assessment of the patient’s vital signs.
3) As the professional understands and affirms the patient’s story of their pain, both parties may develop a shared understanding, helping to address not only the patient’s experience of isolation but also the anger and frustration that can stem from not being taken seriously.
4) Empowering the patient with health care options could be an essential step toward countering experiences of helplessness, particularly given the lack of control many patients experience in the persistence of their pain

My requirement would be to make these recommendations mandatory for DOCTORS – not just support personnel. It is the doctor that writes in your chart  – and that chart follows you for the rest of your life (especially now, with the advent of the EMR). I don’t want derogatory comments and supposition about my condition permanently following me around. Would you?

What are your thoughts about these recommendations?

Would you add to them?  Would you change them in any way?

What experiences have you had with being believed about your chronic illness and pain by your medical professionals, your families, friends, coworkers and occasional parking-lot diagnostician?

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