Invisible Disabilities Should Not Mean Invisible Patients

Blog by Rebecca Zickerman

 

When doctors fail to communicate effectively with their patients, quality of care is impacted; on the patient side, communication barriers such as language, health literacy, and disabilities interfering with information processing may all contribute to detrimental health effects. Health-care providers need more training on how to communicate effectively with patients who have disabilities, especially those whose disabilities are not immediately apparent.

We should recognize that there is not just one definition of a disability. For example, people with functional disabilities visibly struggle with completing basic, everyday tasks; whereas those with invisible or “hidden” disabilities have a condition that cannot be seen from the outside, including (but not limited to) chronic pain, learning disabilities, mental health conditions, and neurological disorders. Using data from 2020, it is estimated that of the more than forty-two million Americans living with a severe disability, 96% of their conditions are not visible.

Previous research primarily addressed the challenges that individuals with visible disabilities experience when seeking medical care, including inadequate communication, accessibility barriers, and a lack of patient-centeredness. When I began researching this topic over two years ago, a literature search on invisible disabilities and health communication did not turn up any results. Even today, there is a dearth of information regarding the challenges that patients with invisible disabilities face when communicating with health-care professionals, even though they likely exist. With this in mind, in 2023 I surveyed people with invisible disabilities through the Invisible Disabilities Association in order to understand the barriers they face when seeking medical care and communicating with a health-care provider.

The survey results showed that individuals with invisible disabilities were discouraged by ineffective communication with their health-care provider and attributed this poor communication to a lack of understanding about their disability. Some respondents commented that “certain providers understand more than others,” or that “the physician understands the visible elements but not the hidden ones.” Others were more concerned that their physician did not believe them, or that their physician understood the diagnosis but did not want to treat them.  Of those who claimed their primary health-care provider misunderstood the nature of their disability (60% of total respondents), 77% indicated that this lack of understanding was a barrier to effective health communication and treatment. Many respondents agreed that their health literacy improved when providers showed kindness and patience, gave resources to aid comprehension, and helped with decision making. With over 80% of medical schools in the United States reporting that they do not feel comfortable treating patients with disabilities, increased awareness and knowledge of the unique set of challenges these patients experience, as well as strategies to treat them, should be a priority in medical school curricula.

In the age of redefining the standards of medical care, we must prioritize all patients. As an aspiring physician, I am determined to make a difference in the way that people with disabilities, both visible and invisible, are treated when seeking health care. Everybody deserves to be seen. Currently, people with disabilities are not adequately recognized in health care, and people with invisible disabilities are truly invisible.

 

Rebecca Zickerman will graduate from Muhlenberg College in May 2024 with a degree in Public Health. She has conducted undergraduate research on the communication barriers that people with disabilities face when seeking medical care and is planning on attending medical school.

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