Validation on Invalidation of Endometriosis

Allyson C. Bontempo, MA, Ph.D. Candidate in Health Communication, Rutgers University

“It’s all in your head.” “It’s psychosomatic.” “It’s anxiety.” “It’s depression.” “You’re overreacting.” “It’s normal.” “You just have really bad [insert specific bodily experience here].” Really, any use of the word ‘just’ or ‘only’ preceding clinicians’ verbal explanation that downplays the cause and/or severity of patients’ presumed-to-be “normal” symptom(s).

Many in the patient and health advocacy communities refer to this as ‘medical gaslighting.’ However, in the academic world—in which I wish work on this topic is read and ultimately accepted by clinicians—I refer to it more neutrally as ‘symptom invalidation.’ In essence, the patient’s perspective regarding the existence, cause, and/or severity of one or more of their symptoms is not acknowledged or deemed legitimate (i.e., is invalidated) by another.

Regardless of what it may be called and by whom, symptom invalidation is all too familiar to too many individuals. It has likely been experienced by everyone at one point or another in their life, from clinicians and/or by family, friends, significant others, coworkers, or even strangers. Though, the implications are greater when it occurs from clinicians, as they are the ones responsible for patients’ care.

It appears to be more prominent among illnesses that are diagnoses of exclusion—in other words, illnesses for which there is no precise or relatively certain means of diagnosis. Common examples include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS; e.g., Anderson et al., 2012), fibromyalgia (e.g., Sim & Madden, 2008), dysautonomia (e.g., Stiles et al., 2018), long haul COVID (e.g., Roth & Mariacarla, 2021), and, perhaps most evidently, undiagnosed illness (e.g., Nettleton, 2006).

But what about endometriosis? Endometriosis is not a diagnosis of exclusion and can more or less be ‘definitively’ diagnosed. Although no diagnosis is ever 100% certain (National Academies of Sciences, Engineering, and Medicine, 2015), it is a diagnosis that arguably can be decided on with greater certainty than many other illnesses. Furthermore, it is a disease that is roughly as common as diabetes (Centers for Disease Control and Prevention, 2021) and that falls within a specialty that, unlike most other specialties, has annual well visits built into its system (Bontempo & Mikesell, 2020). This, then, begs the question: How can the high prevalence of invalidation among individuals with endometriosis be adequately explained and justified given these unique factors that should, in theory, make misdiagnosis and invalidation less likely to occur?

Over the past five years, since I began my work on endometriosis, I have noticed that qualitative study after qualitative study has either investigated symptom invalidation or symptom invalidation has surfaced in the results of larger research investigations (for example, studies investigating the patient experience more broadly, studies investigating the healthcare experiences or needs of patients, studies investigating the diagnostic journey of patients). This work has become so expansive over the years (see Pettersson & Berterö, 2020) that I fear we’ve reached a point at which we are no longer moving the study of symptom invalidation forward in a meaningful way. Although it is important to report on the patient experience and have those stories told and heard, it is now necessary to move beyond this work so that we are no longer continuing to only report on the problem and are instead (or also) reporting on attempts at change.

Thinking about the science of behavior change, we must consider our target audience – who are those we wish to reach with this work if our goal is to effect change? Presumably those who can effect this given change. Is it clinicians? Healthcare organizations? Medical education? Policymakers? All of the above?

Regardless of the level at which our target audience is situated—whether at the interpersonal level (e.g., individual clinicians) or at the state or federal level (e.g., policymakers)—in order for others who are not impacted by endometriosis nor members of endometriosis advocacy organizations to more deeply appreciate the importance and impact of symptom invalidation in the medical encounter for patients, we must ‘meet them where they are.’ And that, I believe, is through the use of evidence in the form of aggregated, statistical data that show that symptom invalidation is ‘statistically and significantly’ associated with negative health outcomes. We know that patient-centered communication (the opposite of symptom invalidation) improves care, well-being, healthcare spending, health disparities, and is simply the ‘right’ thing to do (Epstein et al., 2010). And this, here, may be our selling point – there is something to gain for all stakeholders involved. But we haven’t gotten to this point yet.

One of the most obvious and perhaps damaging effects symptom invalidation has on patients is that, especially when there are repeated negative medical encounters of this nature and over a long span of time, it makes them feel pretty awful about themselves, even to the point where they begin to no longer trust themselves (at least until the point of diagnosis, which seems to serve to finally validate their experiences and eliminate the belief or feeling that they are ‘crazy’; e.g., see Grogan et al., 2018). Not only are they suffering physically, but they are also needlessly suffering emotionally. For this reason, this became my starting point.

With the help of several endometriosis organizations and centers that posted the study advertisement to their open social media sites, I administered a one-time, anonymous, online survey for individuals with endometriosis. Survey topics included demographic and endometriosis-related information, experiences of being invalidated in medical encounters, and several self-report questionnaires capturing ratings of their medical encounters and current psychological and physical health. The variables that were analyzed that stemmed from the questionnaires were self-esteem (Rosenberg, 1965) and depression (Radloff, 1977). Furthermore, I constructed two questionnaires specifically for this study in an attempt to capture this idea of symptom invalidation after participants were asked to refer to a particular medical encounter prior to their diagnosis in which they perceived the clinician was dismissive of their symptoms (i.e., symptom invalidation) and/or of them, personally (i.e., personalized invalidation).

I analyzed the data after a sufficient number of individuals with endometriosis had taken the survey. First, I looked at symptom invalidation (e.g., “The clinician dismissed my symptoms”). Thus, I looked at whether or not patient ratings of increased symptom invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased symptom invalidation from their clinician, is it significantly associated with reduced self-esteem as well as increased depression? The results were mixed: increased symptom invalidation was significantly associated with reduced self-esteem but not with increased depression.

Next, I looked at personalized invalidation (e.g., “The clinician dismissed me”). Thus, I looked at whether or not patient ratings of increased personalized invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased personalized invalidation from their clinician, is that increased personalized invalidation significantly associated with reduced patient self-esteem as well as increased patient depression? In contrast to my examination of symptom invalidation above, the results for personalized invalidation, here, showed that increased personalized invalidation was associated with both self-esteem and depression. First, increased personalized invalidation was associated with decreased patient self-esteem and, second—in contrast to the results of symptom invalidation—increased personalized invalidation was also significantly associated with higher patient depression.

Given the results presented in the previous paragraph, I lastly looked at whether or not a lowering of patient self-esteem is the mechanism through which increased personalized invalidation is associated with increased patient depression. In other words, I explored and tested the following question: does increased personalized invalidation from clinicians lead to lowered self-esteem ratings among patients, and does this lowered self-esteem, in turn, lead to increased depression ratings? Therefore, what I wanted to test was whether or not the lowering of patient self-esteem is a factor that may be responsible for the correlation between increased personalized invalidation and increased patient depression. The analysis I ran subsequently to test this more complex chain of associations indeed confirmed my hypothesis.

It is important to note that this study was observational (i.e., one ‘snapshot’ of the same group of patients for which different characteristics (or variables) and their associations are observed or assessed). This study was therefore not experimental (i.e., participants are assigned to one of at least two different groups on a random basis, with each group consisting of some different condition or manipulation). Therefore, we cannot make the claim that invalidating messages from clinicians causes depression by first lowering patients’ self-esteem. The significant, last analysis I conducted is helpful in supporting this claim but is not enough to actually make this claim. However, I want to emphasize that I am also not saying that invalidating messages from clinicians does not cause depression by first lowering patients’ self-esteem. This could very well be the case; however, the type of study I conducted (i.e., an observational, cross-sectional survey) was not designed to support this claim. An experimental study needs to be conducted to answer this question of whether or not one thing causes another (Kazdin, 2021).

The findings of this study are not actually ‘news,’ as it is all too commonly reported in the existing qualitative work and within health advocacy communities. However, these findings may be therapeutic to patients – they can validate patients’ experiences with these negative medical encounters and provide hope that work is indeed being conducted to bring this issue that largely lives within health advocacy communities to the academic sphere and those who really need to know this. Furthermore, these findings provide the first quantitative support via statistical data that symptom invalidation—particularly, personalized invalidation—can have a real, psychological impact on patients and therefore cannot (and should not) be ‘dismissed’ as benign. My hope is that a program of research can continue to be developed to shine light on the negative physical and psychological impact of symptom invalidation on patients and, ultimately, effect change.

References:

Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education & Counseling, 86, 147-155. https://doi.org/10.1016/j.pec.2011.04.016

Centers for Disease Control and Prevention. (2020). National diabetes statistics report 2020: Estimates of diabetes and its burden in the United States. Retrieved December 4, 2020 from: https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf

Epstein, R. M., Fiscella, K., Lesser, C. S., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29, 1489-1495. https://doi.org/10.1377/hlthaff.2009.0888

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology & Health, 33, 1-15. https://doi.org/10.1080/08870446.2018.1496252

Kazdin, A. E. (2021). Research design in clinical psychology. Cambridge, UK: Cambridge University Press.

National Academies of Sciences, Engineering, and Medicine. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.

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Pettersson, A., & Berterö, C. M. (2020). How women with endometriosis experience health care encounters. Women’s Health Reports, 1, 529-542. https://doi.org/10.1089/whr.2020.0099

Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. https://doi.org/10.1177/014662167700100306

Rosenberg, M. (1965). Society and the adolescent child. Princeton, NJ: Princeton University Press.

Roth, P. H., & Mariacarla, G. B. (2021). The contested meaning of “long COVID”–Patients, doctors, and the politics of subjective evidence. Social Science & Medicine, 114619.

Sim, J., & Madden, S. (2008). Illness experience in fibromyalgia syndrome: A meta-synthesis of qualitative studies. Social Science & Medicine, 67, 57-67. https://doi.org/10.1016/j.socscimed.2008.03.003

Sowislo, J. F., & Orth, U. (2013). Does low self-esteem predict depression and anxiety? A meta-analysis of longitudinal studies. Psychological Bulletin, 139, 213.