The Invisible Illness

Ehlers-Danlos is considered an invisible illness, which means that you cannot necessarily tell by looking at a person that they have an ailment or disability (Connell, 2017). Some experiences folx with invisible illnesses have had include physicians and loved ones questioning if they are legitimately sick or in need of aid (Dobson, 2021; Paxman, 2019; Smart, 2001; Taylor & Epstein, 1999), delayed diagnosing (Ferman & Hamm, 2016), feelings of isolation, powerlessness, avoidance (Kline & Davidson, 2022; O’Shea & Kaplan, 2018; Tankha et al., 2020), and living in a world that does not adjust to the unique needs of those with invisible illness (Pappas, 2020). Research shows that the lived experience of having an invisible illness includes making sense of the diagnosis and symptoms, dealing with the emotional and mental impact, finding normalcy, the journey of disclosure, asking for accommodations, and navigating stigma (Carroll et al., 2019; Natale, 2020; Warren, 2020).

Testimonies

Izzy shares her experiences with EDS

Pippa shares her experiences with EDS

Jorden, A. (2024). Capturing Women’s Biopsychosocial Experience of Living With Ehlers-Danlos Syndrome Through Photography (dissertation). ProQuest. Retrieved from https://www.proquest.com/docview/3201334426/580943EFDD44F80PQ/1?sourcetype=Dissertations%20&%20Theses.

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Resources:

Carroll, L., Graff, C., Wicks, M., & Diaz Thomas, A. (2019). Living with an invisible illness: A qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia. Quality of Life Research, 29(3), 673–681. https://doi.org/10.1007/s11136-019-02350-2

Connell, W. (2017, July 16). From defining invisible disability to invisible no more -- what is an invisible disability?. Invisible Disabilities® Association. https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/

Dobson, J. (2021). Invisible illness and measurability. AMA Journal of Ethics, 23(7), 512–513. https://doi.org/10.1001/amajethics.2021.512

Ferman, J., & Hamm, D. (2016). EDS worldwide survey summary. Retrieved from http://www.chronicpainpartners.com/free-webinarresults-of-the-eds-awareness-international-survey/

Kline, B., & Davidson, D. (2022). College Students with Invisible Illnesses and Disabilities: Disclosure, Hiding, and Support. College Student Affairs Journal, 40(2), 121–135. https://files.eric.ed.gov/fulltext/EJ1366582.pdf

Natale, G. (2020). (dissertation). ProQuest. Retrieved 2023, from Experiencing Invisible Chronic Illnesses at Work and in the Clinic: “It’s almost like people have to physically see it.”

O’Shea, A., & Kaplan, A. (2018). Disability identity and use of services among college students with psychiatric disabilities. Qualitative Psychology, 5(3), 358–379. https://doi.org/10.1037/qup0000099

Pappas, S. (2020, November 1). Despite the ADA, equity is still out of reach. American Psychological Association. https://www.apa.org/monitor/2020/11/feature-ada

Paxman, C. (2019). “Everyone thinks I am just lazy”: Legitimacy narratives of Americans suffering from fibromyalgia. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 25(1), 121–137. https://doi.org/10.1177/1363459319857457

Smart, J. (2001). Disability, society, and the individual. Teaching Sociology, 30(1), 120. https://doi.org/10.2307/3211526

Tankha, H., Caño, A., & Dillaway, H. (2020). “Now i have hope”: Rebuilding relationships affected by chronic pain. Families, Systems, & Health, 38(1), 51–56. https://doi.org/10.1037/fsh0000472

Taylor, S., & Epstein, R. (1999). Living well with a hidden disability: Transcending doubt and shame and reclaiming your life (1st ed.). New Harbinger Publications, Distributed in the U.S.A. by Publishers Group West.

Warren, R. (2020). The impact of invisible illness and invisible disability on music therapy practica students. Journal of Music Therapy, 57(2), 193–218. https://doi.org/10.1093/jmt/thaa004