In this paper, I comment on a growing literature documenting that many patients perceive their symptoms have been dismissed, ignored, not taken seriously, not believed, etc. (i.e. invalidated) by healthcare providers. I provide a narrative review of research reporting on this patient-provider phenomenon, invalidation of patient symptoms, in various illness contexts in order to highlight the variability concerning how scholars have been referring to the seemingly same phenomenon. Next, I discuss the challenges this variability poses for scholarship, including how it precludes the ability to build on our understanding of how it contributes to the patient experience and related health outcomes. I conclude with recommendations for future research.
AliAVitulanoLLeeR, et al. (2014) Experiences of patients identifying with chronic Lyme disease in the healthcare system: A qualitative study. BMC Family Practice15: 1–8.
2.
ÅsbringPNärvänenAL (2002) Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research12: 148–160.
3.
AxSGreggVJonesD (1997) Chronic fatigue syndrome: Sufferers’ evaluation of medical support. Journal of the Royal Society of Medicine90: 250–254.
4.
BallardKDLowtonKWrightJT (2006) What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility & Sterility86: 1296–1301.
5.
BeckATRushAJShawBE, et al. (1979) Cognitive Therapy of Depression. New York, NY: The Guilford Press.
6.
BerglundBAnne-CathrineMRandersI (2010) Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome. Disability & Rehabilitation32: 1–7.
7.
BesaEH (2015) Exploring the Lived Experiences of Complex Regional Pain Syndrome (CRPS) Patients. Davis, CA: University of California, Davis.
8.
Braeuninger-WeimerKAnjarwallaNPincusT (2019) Discharged and dismissed: A qualitative study with back pain patients discharged without treatment from orthopaedic consultations. European Journal of Pain23: 1464–1474.
9.
BurkeMJ (2019) “It’s All in Your Head”—Medicine’s silent epidemic. Journal of the American Medical Association Neurology76: 1417–1418.
10.
ByrneBM (2016) Structural Equation Modeling with AMOS: Basic Concepts, Applications, and Programming. New York, NY: Routledge.
11.
CoxHHendersonLAndersenN, et al. (2003) Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. International Journal of Nursing Practice9: 2–9.
12.
DennyE (2004) ‘You are one of the unlucky ones’: Delay in the diagnosis of endometriosis. Diversity in Health & Social Care1: 39–44.
13.
DennyE (2009) “I never know from one day to another how I will feel”: Pain and uncertainty in women with endometriosis. Qualitative Health Research19: 985–995.
14.
DicksonAKnussenCFlowersP (2007) Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology & Health22: 851–867.
15.
DurhamJSteeleJGWassellRW, et al. (2010) Living with uncertainty: Temporomandibular disorders. Journal of Dental Research89: 827–830.
16.
EdwardsCRThompsonARBlairA (2007) An ‘overwhelming illness’ women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis. Journal of Health Psychology12: 203–214.
17.
FacchinFSaitaEBarbaraG, et al. (2018) “Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health. Journal of Health Psychology23: 538–549.
18.
GrundströmHDanellHSköldE, et al. (2020) “A protracted struggle” – A qualitative blog study of endometriosis healthcare experiences in Sweden. Australia Journal of Advanced Nursing37: 20–27.
19.
GuiseJMcVittieCMcKinlayA (2010) A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors. Journal of Health Psychology15: 426–435.
20.
HintzEAVenetisMK (2019) Exploring the effects of patient-provider communication on the lives of women with vulvodynia. In: KellettP (ed.) Narrating Patienthood: Engaging Diverse Voices on Health, Communication, and the Patient Experience. Lanham, MD: Rowman & Littlefield, pp.99–116.
21.
HuntingtonAGilmourJA (2005) A life shaped by pain: Women and endometriosis. Journal of Clinical Nursing14: 1124–1132.
22.
HurstHSummersABeaverK, et al. (2014) Living with encapsulating peritoneal sclerosis (EPS): The patient’s perspective. Peritoneal Dialysis International34: 758–765.
23.
Institute of Medicine; Committee on Improving the Quality of Health Care in America (2001) Crossing the Quality Chasm: A New Health System for the Twenty-First Century. Washington, DC: The National Academies Press.
24.
KoolMBvan MiddendorpHLumleyMA, et al. (2013) Social support and invalidation by others contribute uniquely to the understanding of physical and mental health of patients with rheumatic diseases. Journal of Health Psychology18: 86–95.
25.
KrebsESchoenbauerKV (2019) Hysterics and heresy: Using dialogism to explore the problematics of endometriosis diagnosis. Health Communication35: 1–10.
26.
LarunLMalterudK (2007) Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies. Patient Education & Counseling69: 20–28.
MarkovicMMandersonLWarrenN (2008) Endurance and contest: Women’s narratives of endometriosis. Health3: 349–367.
29.
National Academies of Sciences, Engineering, and Medicine (2015) Improving Diagnosis in Health Care. Washington, DC: The National Academies Press.
30.
NettletonS (2006) ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms. Social Science & Medicine62: 1167–1178.
31.
PageLAWessleyS (2003) Medically unexplained symptoms: Exacerbating factors in the doctor–patient encounter. Journal of the Royal Society of Medicine96: 223–227.
32.
PetersSStanleyIRoseM, et al. (1998) Patients with unexplained symptoms: Sources of patients’ authority and implications for demands on medical care. Social Science & Medicine46: 559–565.
33.
PetterssonABerteröCM (2020) How women with endometriosis experience health care encounters. Women’s Health Reports1: 529–542.
34.
PriceEWalkerE (2014) Diagnostic vertigo: The journey to diagnosis in systemic lupus erythematosus. Health18: 223–239.
35.
RhodesLAMcPhillips-TangumCAMarkhamC, et al. (1999) The power of the visible: The meaning of diagnostic tests in chronic back pain. Social Science & Medicine48: 1189–1203.
36.
SimJMaddenS (2008) Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies. Social Science & Medicine67: 57–67.
37.
SloanMNaughtonFHarwoodR, et al. (2020) Is it me? The impact of patient–physician interactions on lupus patients’ psychological well-being, cognition and health-care-seeking behaviour. Rheumatology Advances in Practice4: rkaa037.
38.
StennerPHDanceyCPWattsS (2000) The understanding of their illness amongst people with irritable bowel syndrome: A Q methodological study. Social Science & Medicine51: 439–452.
39.
StephensonMTHolbertRLZimmermanRS (2006) On the use of structural equation modeling in health communication research. Health Communication20: 159–167.
40.
StewartDCSullivanTJ (1982) Illness behavior and the sick role in chronic disease: The case of multiple sclerosis. Social Science & Medicine16: 1397–1404.
41.
StilesLECinnamonJBalanI (2018) The patient perspective: What postural orthostatic tachycardia syndrome patients want physicians to know. Autonomic Neuroscience215: 121–125.
42.
StocklA (2007) Complex syndromes, ambivalent diagnosis, and existential uncertainty: The case of Systemic Lupus Erythematosus (SLE). Social Science & Medicine65: 1549–1559.
43.
ZaleMLambertELaNoueMD, et al. (2020) Shedding light on endometriosis: Patient and provider perspectives on a challenging disease. Journal of Endometriosis & Pelvic Pain Disorders12: 69–76.
