What is Invalidation and What to Do If You Experience It

Your periods are causing you tremendous pain, so you book an appointment with a nearby OB/GYN. At your appointment, the medical assistant shows you to your appointment room, then asks you to undress and gives you a paper gown to change into for your appointment. In more ways than one, you are incredibly vulnerable.

When the OB/GYN walks in, you disclose your painful periods to them. Instead
of asking you follow-up questions to find out more about what you’re experiencing, the physician tells you that painful periods are normal, and asks what else is going on in your life that might have led you to think painful periods aren’t normal. You might be told that you just have a low pain threshold. Or you’re told that you’re depressed, and that depression is just making your periods seem worse than they
really are. Or that you must have anxiety that causes you to be more sensitive to pain. Or that your pain is just from wearing pants that are too tight in the waist. Or that you’re not in pain and are just looking for a prescription for pain medication. Etc. Etc. Etc. All while you’re sitting there naked, listening to the OB/GYN, wearing nothing but a paper gown and probably feeling vulnerable and helpless.

These are real stories reported to me by patients with endometriosis, though they likely don’t come as a surprise to you if you’ve subscribed to Pip. All of these responses from the OB/GYN are instances of invalidation.

What is Invalidation?
Invalidation is a construct that was first described by the clinical psychologist, Marsha Linehan.

Invalidation occurs when the “communication of private experiences is met by erratic, inappropriate, and extreme responses.” 1 In healthcare encounters, invalidation occurs when patients’ symptoms are treated as not real or of significance to the clinician. Invalidation has two primary characteristics. First, it
tells a person that they are wrong in their description and understanding of their own lived experiences.

Second, it attributes a person’s experiences to socially unacceptable personality traits. So, when a patient is told they are depressed, they are told that they are wrong about what they are physically reporting to the clinician and that, instead, the issue is mental illness. This is the first characteristic of invalidation. Additionally, when a patient is told that they are depressed, it is depression that is ascribed
as responsible for their “incorrect” interpretation, a socially unacceptable personality trait that also happens to be stigmatizing. This is the second characteristic of invalidation.

In any case, when your symptoms are being invalidated, they are being attributed to something that is within your personal control, and so the responsibility or blame is essentially placed on the patient. In the examples at the beginning of this post, symptoms were being misattributed to the patient’s personal “weakness” and intolerability of “normal” period pain, to depression and resulting distorted thinking, to anxiety and increased sensitivity to pain, to wearing pants too tight in the waist, and to drug-seeking behavior. In none of these examples are the symptoms being attributed to something external to the patient, that is beyond the patient’s control.

My work also suggests that it’s not just what clinicians say but also what they do—or don’t do—that leads to feelings of invalidation. For example, if clinicians don’t take a history of the patient’s symptoms by asking follow-up questions, if clinicians don’t perform a pelvic examination on the patient, if clinicians don’t send the patient out for diagnostic testing, or if clinicians don’t refer the patient to an appropriate
specialist, all these can signal to patients that their symptoms are not being taken seriously. These behaviors often accompany the communicative aspects (i.e., verbal messages) of invalidation.

The Harm of Invalidation
Invalidation is associated with the following negative consequences 2 :
 Negative affect, negative self-esteem, depression, and suicidal ideation
 Healthcare-related anxiety or trauma
 Loss of trust in specific clinicians, clinicians generally, or the larger healthcare system
 Frustration and anger toward specific clinicians, clinicians generally, or the larger healthcare system
 Symptom underreporting (choosing to not disclose symptoms to a clinician out of fear of how they may react)
 Healthcare system avoidance (delaying, taking a break from, or terminating care, especially when the care was needed)

Many of these negative consequences have been demonstrated in studies with patients with endometriosis. For example, invalidation has reportedly led to negative affect such as feeling “isolated” and “alone”, “disappointed”, “humiliated” or “stupid”, and “hopeless.” Invalidation has also reportedly led to negative self-esteem, healthcare-related anxiety, distrust in clinicians, frustration and anger toward clinicians, and healthcare system avoidance among patients with endometriosis.

What To Do If You Experience Invalidation
 As tiring as endometriosis can be, being your own advocate is paramount to getting a diagnosis (though this can be hard to do with what little energy you may have). If you feel as though a clinician is invalidating your symptoms, seek out another clinician.
 Keep family, friends, and significant others who validate your symptoms close to you, and try to distance yourself from family, friends, and significant others who actively invalidate your symptoms. Clinicians are not the only ones who can invalidate your symptoms. If your symptoms are being invalidated, it is crucial to have family, friends, and significant others counteract this invalidation by validating your symptoms.
 Remember that a clinician can still validate your symptoms even if they don’t know what’s wrong with you! Clinicians’ uncertainty is not an excuse for invalidation, and your symptoms continue to exist even in the face of uncertainty.
 It is so important that you do not internalize this invalidation! Consult a clinical psychologist trained in cognitive behavioral therapy (CBT), acceptance and commitment therapy (ACT), or dialectical behavioral therapy (DBT). A trained clinical psychologist will be familiar with the concept of invalidation and how to help you manage invalidation and its negative consequences.

If you’d like to seek out such a therapist and don’t know how, you can visit
https://www.abct.org and/or https://www.adaa.org. Both of these organizations have directories of trained psychologists through which you can browse.

References

1. Linehan, M. M. (1993). Cognitive-behavioral treatment for borderline personality disorder. New
   York, NY: Guilford Press.
2. Bontempo, A. C. (2022, May). Negative sequelae of invalidation of patient symptoms: A
   narrative review. Paper presented at the annual conference of the International Communication
   Association (ICA), Health Communication Division, Paris, France.

About the Author

Allyson Bontempo is a PhD Candidate in communication from Rutgers University, where she studies health communication, particularly patient-clinician communication. She is interested in patient-clinician communication in the context of diagnosis. Allyson will graduate with her Ph.D. this October, at which
point she will work as a postdoctoral fellow at the Division of Population Health, Quality, and Implementation Science within the Department of Pediatrics at Rutgers University Robert Wood Johnson Medical School.

Over the past seven years, Allyson has conducted three research projects on patient-clinician communication in the context of endometriosis. She is especially interested in invalidating communication that patients receive from clinicians, especially during their journey to diagnosis, and ways to improve the communication that takes place under conditions of diagnostic uncertainty, when clinicians may be more apt to invalidate patients’ symptoms.

Allyson is a fellow endometriosis patient herself. She was pursuing a Ph.D. in clinical psychology at the time when she was first surgically diagnosed in 2015. Her time in the Ph.D. program, however, was cut short, as Allyson struggled to recover from her surgery. Allyson did not plan to pursue another Ph.D. program, but when she learned about the struggles facing patients with endometriosis while pursuing a
master’s degree in communication at Rutgers University in 2016, she decided to pursue the Ph.D. program in communication so that she could continue conducting research on endometriosis and advocate for patients through her research.