Understanding the lack of understanding: Invalidation from the perspective of the patient with fibromyalgia
Open accessAbstract
Objective: Patients with fibromyalgia have difficulty with the invisibility and medically unexplained character of the syndrome. Disbelief, lack of acceptance, and stigmatization by their spouse, family, colleagues, the health care system, and society are key issues in their lives. Nevertheless, the components of this phenomenon that we term “invalidation” are not clear. The aim of our study was to identify the definition and structure of invalidation as perceived by patients with fibromyalgia. Methods: A hierarchical cluster analysis was applied to examine everyday invalidation experiences of patients with fibromyalgia. Ninety‐four statements about invalidation that were derived from interviews and a card‐sorting (Q‐sort) technique provided the input for this cluster analysis. Results: The hierarchical structure of invalidation showed a higher‐order distinction between statements reflecting “discounting” and “understanding.” Discounting was subdivided into the components “denying” and “patronizing” (consisting of “lecturing” and “overprotecting”). Understanding was subdivided into “supporting” and “acknowledging.” These higher‐order constructs were further subdivided into 15 lower‐order clusters that reflected cognitive, affective, and behavioral aspects of invalidation. Conclusion: Invalidation as perceived by patients with fibromyalgia includes active negative social responses (denying, lecturing, and overprotecting) as well as a lack of positive social responses (supporting and acknowledging) with respect to the patient and the condition of the patient. This definition of invalidation provides a basis to quantify invalidation and to study its impact on symptom severity, quality of life, therapy adherence, therapy outcome, and other important aspects of fibromyalgia.
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Several studies have coded validation in chronic pain patient-partner interactions using the Validation and Invalidation Behavioral Coding System (VIBCS).
“A number of studies have used the Validation and Invalidation Behavioral Coding System (VIBCS[7]) to code validation occurring in interactions between patients with chronic pain and their partners.[1–3]”
From Validating pain communication: current state of the science (2015) · cites this paper as [7]
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“They also perceive a lack of support and acknowledgment which makes it difficult to move on in living with an invisible illness [4].”
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Maafi, A. A., Ghavidel‐Parsa, B., Haghdoost, A., Aarabi, Y., Hajiabbasi, A., Masooleh, I. S., Zayeni, H., Ghalebaghi, B., Hassankhani, A., & Bidari, A. (2016) · The Korean journal of pain · doi:10.3344/kjp.2016.29.3.172 · Cited by 33 · see citing works
“This situation was recently termed as ‘invalidation’ [15].”
BackgroundHomma, M., Ishikawa, H., & Kiuchi, T. (2014) · Clinical Rheumatology · doi:10.1007/s10067-014-2752-6 · Cited by 33 · see citing works
“The 3*I originally intended tomeasure negative social responses specific to patients with internal diseases such as FM [31], such as rejection, disbelief, and a lack of understanding.”
BackgroundRoodenrijs, N. M. T., van der Goes, M. C., Welsing, P. M. J., van Oorschot, E. P. C., Nikiphorou, E., Nijhof, N., Tekstra, J., Lafeber, F. P. J. G., Jacobs, J. W. G., van Laar, J. M., et al. (2021) · Lara D. Veeken · doi:10.1093/rheumatology/keab130 · Cited by 31 · see citing works
Self-citationEstévez‐López, F., Pulido‐Martos, M., Armitage, C. J., Wearden, A. J., Álvarez‐Gallardo, I. C., Grajera, M. J. A., Girela‐Rejón, M. J., Carbonell‐Baeza, A., Aparicio, V. A., Geenen, R., et al. (2016) · PeerJ · doi:10.7717/peerj.1822 · Cited by 30 · see citing works
“, 2008), and many people report to be confronted with socially invalidating responses (Kool et al., 2009; Kool et al., 2011; Kool et al., 2014).”
BackgroundSelf-citationCharacteristics of suitable work from the perspective of patients with fibromyalgia
Bossema, E. R., Kool, M. B., Cornet, D., Vermaas, P., de Jong, M., van Middendorp, H., & Geenen, R. (2012) · Rheumatology · doi:10.1093/rheumatology/ker312 · Cited by 30 · see citing works
Self-citationNociplastic pain concept, a mechanistic basis for pragmatic approach to fibromyalgia
Bidari, A., & Ghavidel‐Parsa, B. (2022) · Clinical Rheumatology · doi:10.1007/s10067-022-06229-5 · Cited by 31 · see citing works
Linton, S. J., Flink, I. K., Nilsson, E., & Edlund, S. M. (2017) · PAIN Reports · doi:10.1097/pr9.0000000000000600 · Cited by 28 · see citing works
“chronic pain since these patients often experience invalidating communication in health care.(12,26) Second, there are limitations to our measurement techniques because communication is difficult to capture in a valid and reliable way.”
BackgroundImpacto do apoio social sobre os sintomas de mulheres brasileiras com fibromialgia
Pegado, R., de Andrade, S. C., Spyrides, M. H. C., Micussi, M. T. A. B. C., & de Sousa, M. B. C. (2016) · Revista Brasileira de Reumatologia · doi:10.1016/j.rbr.2016.05.002 · Cited by 30 · see citing works
Kool, M. B., van de Schoot, R., López‐Chicheri, I., Mewes, R., da Silva, J. A. P., Vangronsveld, K. L. H., Wismeijer, A. A. J., Lumley, M. A., van Middendorp, H., Bijlsma, J. W. J., et al. (2013) · Annals of the Rheumatic Diseases · doi:10.1136/annrheumdis-2012-201807 · Cited by 27 · see citing works
Self-citationWouters, H., van Geffen, E. C. G., Baas-Thijssen, M. C. M., Krol-Warmerdam, E. M., Stiggelbout, A. M., Belitser, S. V., Bouvy, M. L., & van Dijk, L. (2013) · The Breast · doi:10.1016/j.breast.2013.05.005 · Cited by 26 · see citing works
Williams, A., Christopher, G., & Jenkinson, E. (2016) · Journal of Health Psychology · doi:10.1177/1359105316643376 · Cited by 25 · see citing works
Shame Mediates the Relationship Between Pain Invalidation and Depression
Boring, B. L., Walsh, K. T., Nanavaty, N., & Mathur, V. A. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.743584 · Cited by 25 · see citing works
Boyington, J., Schoster, B., & Callahan, L. F. (2015) · The Open Rheumatology Journal · doi:10.2174/1874312901409010001 · Cited by 25 · see citing works
Taylor, A. G., Fischer-White, T. G., Anderson, J. G., Adelstein, K. E., Murugesan, M., Lewis, J. E., Scott, M. M., Gaykema, R. P. A., & Goehler, L. E. (2015) · Stress and Health · doi:10.1002/smi.2648 · Cited by 25 · see citing works
Ruíz-Montero, P. J., van Wilgen, C. P., Segura‐Jiménez, V., Carbonell‐Baeza, A., & Delgado‐Fernández, M. (2015) · Rheumatology International · doi:10.1007/s00296-015-3281-6 · Cited by 26 · see citing works
McMahon, L., Murray, C. D., & Simpson, J. (2011) · Disability and Rehabilitation · doi:10.3109/09638288.2011.628742 · Cited by 25 · see citing works
Psychological Factors Associated with Response to Treatment in Rheumatoid Arthritis
Santiago, T., Geenen, R., Jacobs, J. W. G., & Da, J. A. P. (2014) · Current Pharmaceutical Design · doi:10.2174/1381612820666140825124755 · Cited by 24 · see citing works
“Spouses who, for instance, in an assertive and lecturing way “know” what is best for the patient can impede the patient’s feeling of independence and self-control [143].”
Self-citationThe role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa
Cooper, S., & Gilbert, L. (2016) · Health & Social Care in the Community · doi:10.1111/hsc.12403 · Cited by 24 · see citing works
“Providing support in this way was empowering for those with the condition, and receiving care and empathy from partners had a particularly profound impact on facilitating a return to health for the person with fibromyalgia (Kool et al. 2009, Price & Walker 2015).”
BackgroundSehlo, M. G., Alzahrani, O., & Alzahrani, H. A. (2015) · The International Journal of Psychiatry in Medicine · doi:10.1177/0091217415621032 · Cited by 23 · see citing works
“Invalidation refers to ‘‘overt rejection’’ (discounting) and ‘‘not acknowledged’’ (lack of understanding).(26) This Inventory consists of eight items (repeated for each source of invalidation), covering two factors: lack of understanding (three reversed items) and discounting (five items).”
BackgroundTwo sides on the fibromyalgia coin: physical pain and social pain (invalidation)
Ghavidel‐Parsa, B., & Bidari, A. (2020) · Clinical Rheumatology · doi:10.1007/s10067-020-05304-z · Cited by 25 · see citing works
“Social pain is a painful feeling following social conflicts or lack of understanding about illness status which leads consequently to social rejection or loss [14, 15].”
BackgroundInfluentialSelten, E. M. H., Geenen, R., van der Laan, W. H., van der Meulen‐Dilling, R. G., Schers, H., Nijhof, M. W., van den Ende, C. H. M., & Vriezekolk, J. E. (2016) · Lara D. Veeken · doi:10.1093/rheumatology/kew409 · Cited by 21 · see citing works
“A valid and reliable method to generate and hierarchically structure patients’ opinions as input for a decision tool is concept mapping [17 (cid:2) 19], a method that can be used to thematically analyse and prioritize reasons for treatment choice from a patients’ perspective.”
Self-citationCameron, N. D. E., Kool, M. B., Estévez‐López, F., López‐Chicheri, I., & Geenen, R. (2017) · Rheumatology International · doi:10.1007/s00296-017-3859-2 · Cited by 21 · see citing works
“misunderstanding, disbelief, rejection, stigmatization, and suspicion that the problem is exaggerated or psychological [1].”
Self-citationUse of Complementary and Alternative Medicine in Fibromyalgia: Results of an Online Survey
Pfalzgraf, A. R., Lobo, C. P., Giannetti, V. J., & Jones, K. D. (2020) · Pain Management Nursing · doi:10.1016/j.pmn.2020.07.003 · Cited by 22 · see citing works
“can impact patients on physical, emotional, social, and economic levels (Kool et al., 2009; Hayes et al., 2010; Lobo, Pfalzgraf, Giannetti, & Kanyongo, 2014).”
BackgroundBoring, B. L., Walsh, K. T., Ng, B., Schlegel, R. J., & Mathur, V. A. (2023) · Journal of Pain · doi:10.1016/j.jpain.2023.11.011 · Cited by 21 · see citing works
Molzof, H. E., Newman, A. K., Barnett, M. D., Guck, A., Scott, W., Sturgeon, J. A., & Trost, Z. (2020) · Clinical Journal of Pain · doi:10.1097/ajp.0000000000000817 · Cited by 20 · see citing works
Conceptualizing Symptom Invalidation as Experienced by Patients With Endometriosis
Bontempo, A. C. (2024) · Qualitative Health Research · doi:10.1177/10497323241253418 · Cited by 19 · see citing works
“My de fi nition of symptom invalidation differs from the de fi nition of invalidation proposed by Kool et al. (2009).”
InfluentialInteractions between affect, cognition, and information behavior in the context of fibromyalgia
Chen, A. (2021) · Journal of the Association for Information Science and Technology · doi:10.1002/asi.24538 · Cited by 20 · see citing works
“Lack of understanding and disbelief has been widely reported in the context of fibromyalgia (Armentor, 2015; Barker, 2008; Kool et al., 2009).”
BackgroundBeitel, M., Oberleitner, L., Kahn, M., Kerns, R. D., Liong, C., Madden, L. M., Ginn, J., & Barry, D. T. (2016) · Pain Medicine · doi:10.1093/pm/pnw327 · Cited by 19 · see citing works
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Implication of invalidation concept in fibromyalgia diagnosis
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Chronic fatigue syndrome/fibromyalgia: a “stress-adaptation” model
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“[65,66] In contrast, the stress-adaptation model can be used as a theoretical framework that unambiguously validates the reality and biological basis of the patient’s suffering.”
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Central Sensitization Symptom Severity and Patient-Provider Relationships in a Community Setting
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Fibromyalgia and the Risk of a Subsequent Motor Vehicle Crash
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“Patients with FM commonly report frustration with physicians, dissatisfaction with care, and exasperation with standard biomedical paradigms for their situation 46 .”
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“Studies have shown this tendency to be related to these patients’ feelings of invalidation, loneliness and sometimes embitterment (Kool et al. 2009).”
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Fibromyalgia and Disability Adjudication: No Simple Solutions to a Complex Problem
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Factors in the Building of Effective Patient–Provider Relationships in the Context of Fibromyalgia
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Loneliness in patients with somatic symptom disorder
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Facing Invalidation: A Further Challenge when Living with Chronic Widespread Pain
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Interpretations of partners’ responses to pain behaviours: Perspectives of patients and partners
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- Authors
- Kool, M. B., van Middendorp, H., Boeije, H. R., & Geenen, R.
- Affiliations
- Utrecht University (NL)
- Venue
- Arthritis Care & Research
- Publisher
- Wiley
- Published
- 2009-11-30
- Volume
- 61
- Issue
- 12
- Pages
- 1650-1656
- ISSN
- 0893-7524 (ISSN-L)
- 1529-0123
- OpenAlex
- W2014951024
- Semantic Scholar
- 966a639d7015a90ecf96bc9411e448b9bf33b9e2
- Cited by
- 181
- References
- 30
- Citations by year
- 2026: 7 · 2025: 12 · 2024: 9 · 2023: 14 · 2022: 10 · 2021: 14 · 2020: 16 · 2019: 7 · 2018: 9 · 2017: 12 · 2016: 20 · 2015: 12 · 2014: 9 · 2013: 8 · 2012: 8
- FWCI
- 4.52
- Type
- journal article
- Language
- en
- Open access
- green
- dspace.library.uu.nl
- Licence
- Locations
- Arthritis Care & Research (publishedVersion)
- PubMed (publishedVersion)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- Utrecht University Repository (Utrecht University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- fibromyalgia, invalidation, patient experience, discounting, understanding, denial, lecture method, social support, stigma, medically unexplained symptoms, invisible illness
- MeSH terms
- Adult, Attitude to Health, Denial, Psychological, Female, Fibromyalgia, Humans, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Sick Role, Social Support, Cluster Analysis, Illness Behavior
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