Communicating and Feeling Understood: Long-COVID Experience
Strategies to avoid symptom invalidation.
KEY POINTS
LCAC symptoms include rapid physical exhaustion, chronic fatigue, neurocognitive impairment, changes in smell/taste, and anxiety/depression.
Patients with long-COVID and associated conditions (LCAC) experience new symptom clusters.
Healthcare professionals may invalidate patient symptoms or experiences when they are more uncertain of the diagnosis.
Although challenging, medical uncertainty and anxiety can catalyze open communication between patient and treatment team.
Co-authored by Robert M. Gordon, Psy.D., Joanna B. Wolfson, Ph.D., & Felicia B. Connor, Psy.D., ABPP-RP.
Source: cottonboro-studio/pexels
Long COVID and associated conditions (LCAC) is characterized by the persistence of cognitive, physical, and psychological symptoms beyond three months from the onset of the SARS-COV-2 infection.
Peter et al. (2022) found that patients with LCAC experienced new symptom clusters, including rapid physical exhaustion and chronic fatigue (37.2), neurocognitive impairment (31.3 percent), chest symptoms (30.2 percent), smell or taste disorder (23.6 percent), and anxiety/depression (21.1 percent). Immune dysregulation, autoimmunity, and dysregulation signaling in the brain stem and/or vagus nerve may play a key role in the onset of the symptoms (Davis et al., 2023).
LCAC is an invisible disability with a great deal of variability in symptom presentation from day to day. The onset can occur during the acute infection or after the initial recovery. Patients with LCAC may experience stigma, shame, and embarrassment; uncertainty and lack of control; grief; and loss of independence, autonomy, and identity. In addition, many patients perceive that their symptoms and personal experiences have been dismissed, misunderstood, ignored, not taken seriously or believed, or minimized by medical professionals, friends, and family members (Bontempto, 2021).
Invalidation of patient symptoms or experience is a way to describe patients' subjective experiences during these intentional or unintentional interactions. Invalidation of symptoms appears closely tied to communication that the patient perceives as hurtful (l’Abate, 1997) and can result in inadequate care.
Treatment providers, friends, and family often have good intentions and want the best for the patient. At the same time, not being able to feel the patient’s experience, observing patients who “look the same as before,” discomfort with others’ struggles, or not knowing how to help might lead to unintentional hurtful communication. Invalidating incidents may occur more frequently in illness contexts where the healthcare professional experiences greater diagnostic uncertainty (Bontempto, 2021) and does not know what to recommend, especially in light of their mission to reduce suffering. In some instances, the invalidation of symptoms can be compared to biases and microaggressions that often occur among marginalized groups.
For decades before LCAC, individuals with other chronic conditions (e.g., multiple sclerosis, low back pain, chronic fatigue syndrome, fibromyalgia, and chronic Lyme disease) have shared experiences with symptom invalidation. Bontempo (2021) cited a growing trend of research since the 1980s detailing patient-medical provider interactions characterized by explicit or implicit tension, conflict, and strain related to the patient’s symptom presentation.
The following are some examples of symptom invalidation, even if the comments are made with the best intentions:
Symptoms are attributed to psychological processes: “You must be experiencing a great deal of stress and anxiety,” which patients often hear as, “It’s all in your head.”
“You don’t look like a person unable to exercise or work.”
“Nothing is wrong from your testing,” which providers may not realize is not necessarily reassuring or validating.
To a marginalized patient: “It’s not possible for your pain to be this severe.”
From friends and family: ”You’re still experiencing these symptoms?”
The negative consequences of experiencing symptom invalidation include decreased self-confidence and sense of agency, increased self-doubt, medical anxiety, and loss of trust in the medical care system. As a result, patients may be reluctant to self-disclose symptoms, fears, and concerns or avoid making healthcare appointments or interacting with family, co-workers, and friends.
The following tips are based on our work in an outpatient rehabilitation hospital working with patients with chronic medical conditions, including long-COVID, multiple sclerosis, postconcussion syndrome, and pain and vestibular conditions. Beatrice Wright (1983) emphasized that the patient is the consumer and the expert on their body and symptom experience. It is important that the patient feels that the treatment team is aligned, believes their symptoms are real, and wants and expects them to get better. A lack of faith in one’s healthcare team can be detrimental to the patient’s recovery and, ultimately, their outlook.
Medical professionals, family members, and friends can enhance a sense of empowerment by:
Asking the patient what response style would help them the most (e.g., just listening, helping to problem solve, or providing encouragement).
Helping to create a list of questions or scripts before medical appointments to ensure that critical concerns are addressed and to facilitate a positive interaction. This list might be sent to the treatment team via email or a medical chart beforehand.
The medical team can enhance a sense of collaboration by:
Using statements that validate the patient’s experience, even if medically unexplained. For example, “I believe that you are really in pain,” “That sounds very scary not to know what your body will do next,” or “It must be hard not to know who to go to for help.”
In navigating these stressful and challenging encounters, the patient can utilize the following communication and perspective-taking strategies:
Paraphrase in your own words to convey your understanding of the speaker’s message. Paraphrasing can demonstrate an understanding of the message and reduce defensiveness (Kenney, 2014).
Focus on the impact of the comment using “I” statements. For example, express how someone’s statement or tone of voice made you feel. Ask, “I am just curious. What made you say that?” (Kenney, 2014).
Communicate preferences without demanding them, which reduces the need for the other person to guess what is needed. For example, “It would be helpful to me if…” (Kenney, 2014).
Consider other ways of viewing the interaction (e.g., Is the other person expressing concern, frustration, or fear that my symptoms will not improve?)
Keep in mind that not every provider will be the right fit for you. Trust your gut and seek another opinion when this feels like the right thing to do.
While times of medical uncertainty and anxiety can destabilize, they can be catalysts for improved communication, personal growth, and meaning. Patients must be reminded that they are the consumer and the expert on their symptom experience. The tips provided will hopefully increase a sense of collaboration, empowerment, agency, and mutual respect in navigating the uncertainty of LCAC.
References
Bontempto, A. C. (2021). The need for a standardized conceptual terms to describe invalidation of patient symptoms. Journal of Health Psychology, 27(9), 1-11. https://doi.org/10.1177/1359105321102478
Davis, H. E., McCorkell, L., Vogel, J. M., & Topol, E. J. (2023). Long COVID: Major findings, mechanisms and recommendations. Nature Review Microbiology, 21, 133-146. https://www.nature.com/articles/s41579-022-00846-2
Kenney, G. (2014). Interrupting microaggressions. College of the Holy Cross, Diversity Leadership & Education. Accessed online on January 31, 2023. https://dornsife.usc.edu/assets/sites/1244/docs/Tool_InterruptingMicroaggressions.pdf
L’Abate, I. (1997). Intimacy is having hurt feelings: A reply to David Mace. Journal of Marriage and Family Counseling, 3, 13-16. https://doi.org/10.1111/j.1752-0606.1977.tb00450.x
Peter, R. S., Nieters, A., Krausslich, H. S, Brockmann, S. O, Gopel, S., Kindle, G., Merle, U., Steinacker, J. M., Rothenbacher, D., & Kern, W. V. (2022). Post-acute sequelae of COVID-19 six to 12 months after infection: Population based study. BMJ/ 37:e071050. https://doi.o4g/10.1136/bmj-2022-071050
Wright, B. (1983). Physical disability: A psychosocial approach (2nd ed.), Harper & Row.https://www.doi.org/10.1037/10589-010
Read article on Psychology Today: https://www.psychologytoday.com/us/blog/psychological-trauma-coping-and-resilience/202302/communicating-and-feeling-understood-long