General Discussion
Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsA Narrative Review of the Impact of Disbelief in Chronic Pain
Abstract and Introduction
Abstract
Although the experience of being believed is frequently alluded to in chronic pain literature, few studies have specifically explored this phenomenon and even fewer reviews have been offered. This narrative review sought to explore the wider social context in which individuals with chronic pain may experience disbelief toward their pain. Articles were obtained through a search of eight databases and a hand search of the references of full-text papers. Key results within the articles were noted and integrated to form three main themes:
stigma, the experience of isolation, and the experience of emotional distress. The experience of stigma can occur in a number of ways. It may be through actual or perceived encounters with others; it can be through the use of psychologic explanations of pain; it can come through a perceived challenge to one's integrity and subsequently affect an individual's identity; and such stigma may be influenced by negative female stereotypes.
The loss of relationships associated with being disbelieved can lead to the experience of isolation. This may be self-initiated, particularly when an individual has been given a contested diagnosis.
Finally, disbelief can lead to emotional distress. This can take the form of guilt, depression, and anger. Throughout the article, implications for health care professionals, working with individuals living with chronic pain, are discussed.
Introduction
Pain is famously defined by Margo McCaffery (1968) as "whatever the experiencing person says it is, existing whenever he says it does" (McCaffery & Pasero, 1999, p. 17). To act in accord with this definition of pain, one must take the words of the patient at face value. The practitioner must accept the patient's subjective report as being so. Therefore, the experience of having one's pain disbelieved may be described as the failure to accept an individual's account of his or her pain as true.
The reader should note that within the literature a similar concept is known as delegitimation. Norma Ware (1992), drawing on the work of the anthropologist Arthur Kleinman, defined delegitimation as "the experience of having one's perceptions of an illness systematically disconfirmed" (p. 347). Within her work in Chronic Fatigue Syndrome (CFS), Ware highlights examples of delegitimation, such as others rendering an individual's symptoms as trivial or psychologic.
The concepts of being disbelieved and delegitimation are similar but not entirely synonymous. Perhaps a key difference is that an individual may have his or her experiences unintentionally discounted by others and thus experience delegitimation. This does not necessarily mean that the other person disbelieves the individual's pain account. The focus within this article will be on the disbelief of chronic pain, i.e., pain that has persisted for ?3 months (Bond et al., 2006). The initial starting point for this review followed contact with a review article by Clarke and Iphofen (2005).
They offer an overview of the literature regarding the relationship between the health care professional and the patient in believing the patient's pain. A number of issues are highlighted. First, if patients are not taken seriously, this could compromise the accuracy of pain assessment. Second, regarding a study conducted by Werner and Malterud (2003), in which patients invest considerable amount of effort in maintaining a credible image, Clarke and Iphofen conclude that health care staff are "responsible for recognizing the suffering of the patient and should consequently aim to prevent further disempowerment" (p. 491). A third issue is that of labeling. Clarke and Iphofen suggest that labels are important in conveying the professional's belief in the patient's pain, although care is needed to ensure such labels do not disempower patients in their recovery.
A Narrative Review of the Impact of Disbelief in Chronic Pain
Benjamin J. Newton, BSc (Hons), Jane L. Southall, RGN, BSc (Hons), DMS, Jon H. Raphael, MSc, MD, Robert L. Ashford,
PhD, MMedSc, MA, Karen LeMarchand, BSc (Hons), MSc, Cpsychol
Pain Manag Nurs. 2013;14(3):161-171.
9/22/13 www.medsca
http://www.rsds.org/wp-content/uploads/2015/02/NarrativeReviewof_ImpactofDisbeliefinChronicPain.pdf
wyldwolf
(43,874 posts)It manifested itself as migraines. For that entire period the pain never completely went away. Sometimes it was horrible. Sometimes mild, but usually in between. She tried pain killers, allergy meds, a tins unit and almost had surgery to sever nerves in her neck to alleviate it. Of course, doctors never found any reason for it.
It was a strain on her professional life and our personal & social life. Plans were often canceled at the last minute. Sometimes we were hermits living in a dark house with no contact with the outside world.
She tried elimination diets to see if it was food related - which ultimately led her to the vegan she is today. But what finally 'cured' her was a combination of counseling and yoga.
She is mostly pain-free today. Still gets the occasional headache but nothing like before. So I just want to say chronic pain is real.
HereSince1628
(36,063 posts)I would have thought that chronic pain happens to both genders.
What makes one gender more susceptible to social role modelling/stereotyping?
zazen
(2,978 posts)LostOne4Ever
(9,302 posts)[font style="font-family:'Georgia','Baskerville Old Face','Helvetica',fantasy;" size=4 color=teal]She usually rates it has between a 7-10 out of 10 on the charts they give out. The thought that someone would try and de-legitimize her pain is maddening.[/font]
Ligyron
(7,648 posts)but the idiotic "crackdown" on the dispensing of opiate medication fostered by the DEA and miss-guided legislators in a failed attempt to stem the tide of "abuse" is a very real and serious problem.
Add to that the high school-to-jail pipeline by authorities, often ruining people's lives for something as silly as having some weed on them and this whole drug war BS has to be one of the largest, most expensive public policy failures ever.
cali
(114,904 posts)Partly I suppose, that's its provenance. Smashed my leg, literally into pieces, requiring extensive surgeries. Either the original accident or the first surgery resulted in Complex Regional Pain Syndrome, which in my case is both observable and measurable.
Violet_Crumble
(35,992 posts)But there's been times when I've missed work because of it and I get the vibe from my manager that she doesn't believe me and thinks I'm just taking a sickie. It's annoying trying to explain how debilitating the pain is to someone like that...
IDemo
(16,926 posts)He has suffered from it for about 20 years and is bedridden. He once described the sensation as like having a serrated steak knife run up and down the roof of his mouth. I cannot fathom living with that.
OnionPatch
(6,169 posts)I have chronic migraines and sometimes miss work. I don't get that vibe so much from management, but from co-workers. And it's not even that it's the type of job where they have to work harder if I'm not there, they don't. I just have to make up the time the next day or weekend or use vacation time so it's no skin off their back but I still get this feeling from them like they think I'm slacking or making it up when I'm sick. It's so humiliating. I've gotten so I just don't discuss my health with them at all.
tridim
(45,358 posts)As well as this:
Home-Brewed Opiates Made Possible By Genetically Engineered Yeast
http://www.ibtimes.com/home-brewed-opiates-made-possible-genetically-engineered-yeast-1928733
Painkillers kill. Unfortunately. I've seen it first hand.
cali
(114,904 posts)Oxycodone does. I don't take a lot. Its still effective after several years. And I'm addicted to it. On days when I can get by without it, I don't take it.
ismnotwasm
(42,030 posts)It will be interesting to see how it goes. Green clinics are everywhere. Right now, our state legislature seems more interested in how much money they're gonna make.
ismnotwasm
(42,030 posts)Especially after surgeries, where their opiate needs are higher. We have a chronic pain clinic where I work--specially trained physicians who understand, or should. They are invaluable in a post-operative hospital setting.
I wish every chronic pain sufferer had access to a specialist, and never had to feel "guilty" for suffering from pain. It's hard enough having pan every hour of every day without feeling judged.
Prism
(5,815 posts)I did something profoundly stupid at the gym last year and locked a piriformis around my sciatic nerve. For a month, I had to take three Motrin PM just to sleep at night. I'm not a pot-smoker, but I tried using cannabis to sleep. It did nothing for me.
Ultimately, I went to a chiropractor who used PEDS (butt electrocution!) to unlock the muscle. When the muscle finally let go, I started tearing up with relief.
Then you hear these stories of people living with this kind of pain for years. Cannot fathom it. So tired of moral judgements occupying the space where mercy should live.
kcr
(15,331 posts)"So tired of moral judgements occupying the space where mercy should live." Me, too. I can't even really think of anything to add because that really just perfectly sums it up.
hunter
(38,354 posts)I seem to suffer them as frequently as I have since they started in adolescence, but now they mostly just leave me blind and sensitive to sound, I haven't had an "I'd rather be dead" migraine for a few years now. I also have meds that help, but even with meds a migraine ruins the rest of my day. I'm also suffering the familial arthritis and have fried my stomach with NSAIDS, even went through the bullshit with Celebrex. (That's the one where Pfizer fabricated studies about it's effectiveness, and hid studies that showed for long term use it was as awful as any other NSAID.)
So maybe I have some personal experience that's relevant.
My brother has a few permanent injuries that are obviously painful, and he's also been diagnosed with fibromyalgia because much of his pain is not in the obviously injured places. It took him a long time to find a doctor who was willing to work with him. If he loses that doctor he'll have to start the entire "disempowering" process all over again.
Our society's approach to problems of chronic pain, coupled with our cruel treatment of addicts and the "war" on drugs, is utterly barbaric.
UglyGreed
(7,661 posts)replies. Just wanted to kick this so others may learn what some have to deal with on top of their pain. No one wants to be called a liar, drug seeker, faker or just lazy.Be it in person or even online. This type of treatment just adds to the person suffering. I am not a person who practices schadenfreude and even though I stopped taking pain medication because of pressure from my doctors this does not mean I will not speak up on the behalf of others.