Preprint / Version 1

Unmasking the Unseen

##article.authors##

  • Lola Aouizerate Miami Beach Senior High

DOI:

https://doi.org/10.58445/rars.1630

Keywords:

 Invisible diseases, treatment, awareness

Abstract

Objective

 Invisible diseases, such as Crohn’s disease, arthritis, celiac disease (CD), and diabetes, often go unnoticed by many, leading to widespread misconception. Increased awareness can pave the way for improved treatment, particularly for diseases that frequently remain untreated.

Methods

Participants in the USA from ages 22-77 with a diagnosed invisible disease completed a 24-question survey gathering demographic data and personal insights into their experiences which were analyzed utilizing Excel software. All participants consented.

Results

The narratives offered by participants in this study provided a glimpse into the lived experiences of people dealing with invisible diseases. Their personal views reveal a mosaic of resilience and adaptation, shedding light on the numerous challenges of managing diseases including Crohn's disease, arthritis, CD, and diabetes. From the meticulous dosage of prescriptions to the emotional toll of navigating social interactions, participants' experiences create an obvious representation of the complications that come with the disease. After the study was completed, it was clear that these often undetected diseases play a heavy role in the quality of the patient’s daily lives.

Discussion

The intricate views of responses from participants provide crucial insights into the complex realm of invisible diseases. Their stories not only shed light on the difficulties associated with treating chronic disorders but also highlight the necessity of comprehensive approaches to treatment. By looking into the complexities of lived experiences, this study lays the framework for increasing awareness and understanding of invisible illnesses among healthcare communities and society as a whole. Furthermore, the stories recounted by participants demonstrate the resilience and determination of individuals. As we continue to explore and analyze the data collected, these narratives will continue to act as guiding beacons, revealing paths toward increased care and advocacy for individuals living with invisible diseases.

References

Agnieszka Sowińska, & Rosa Pezoa Tudela. (2023). Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations. Ternational Journal of Qualitative Studies on Health and Well-Being, 18(1). https://doi.org/10.1080/17482631.2023.2221905

Alimoradi, Z., Siboni, F., Atashi, V., Alipour, M., & Khatooni, M. (2019). Quality of life in different chronic diseases and its related factors. International Journal of Preventive Medicine, 10(1), 65. https://doi.org/10.4103/ijpvm.ijpvm_429_17

Ambrosio, L., Senosiain García, J. M., Riverol Fernández, M., Anaut Bravo, S., Díaz De Cerio Ayesa, S., Ursúa Sesma, M. E., Caparrós, N., & Portillo, M. C. (2015). Living with chronic illness in adults: a concept analysis. Journal of Clinical Nursing, 24(17-18), 2357–2367. https://doi.org/10.1111/jocn.12827

Basu, R. (2017). Type 1 Diabetes | NIDDK. National Institute of Diabetes and Digestive and Kidney Diseases. https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/type-1-diabetes

Campbell, L. (2023, December 20). But..You Don’t Look Sick: What Is an Invisible Illness? Verywell Mind. https://www.verywellmind.com/what-is-invisible-illness-you-dont-look-sick-5119873

Celiac Disease Foundation. (2018). Celiac Disease Screening | Celiac Disease Foundation. Celiac Disease Foundation; Celiac. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Cushing, K., & Higgins, P. D. R. (2021). Management of Crohn Disease. JAMA, 325(1), 69. https://doi.org/10.1001/jama.2020.18936

Fabian, R. (2018, March 5). What is Invisible Illness? (+ How to Explain it to Others). Talkspace. https://www.talkspace.com/blog/what-is-invisible-illness-how-to-explain-it-to-others/#:~:text=An%20invisible%20illness%20is%20an

Farina, E., Roncoroni, L., Lombardo, V., Scricciolo, A., Vecchi, M., Doneda, L., & Elli, L. (2021). Clinical Value of Tissue Transglutaminase Antibodies in Celiac Patients over a Long Term Follow-Up. Nutrients, 13(9), 3057. https://doi.org/10.3390/nu13093057

Fernandez, G. (2021, December 16). The Intersection of Mental Health and Chronic Disease | Johns Hopkins Bloomberg School of Public Health. Johns Hopkins Bloomberg School of Public Health. https://publichealth.jhu.edu/2021/the-intersection-of-mental-health-and-chronic-disease

Li, H., Ge, S., Greene, B., & Dunbar-Jacob, J. (2019). Depression in the context of chronic diseases in the United States and China. International Journal of Nursing Sciences, 6(1), 117–122. https://doi.org/10.1016/j.ijnss.2018.11.007

Lydia Aimone. (2019, November 17). Refocus: Look Again. Refocus: Look Again. https://refocuslookagain.org/articles-main/2019/11/17/living-under-the-stigma-of-an-invisible-illness#:~:text=People%20with%20invisible%20disabilities%20often%20struggle%20to%20create

Piovani, D., Nikolopoulos, G. K., & Bonovas, S. (2022). Non-Communicable Diseases: The Invisible Epidemic. Journal of Clinical Medicine, 11(19), 5939. https://doi.org/10.3390/jcm11195939

Salamon, M. (2023, May 1). Invisible illness: More than meets the eye. Harvard Health. https://www.health.harvard.edu/diseases-and-conditions/invisible-illness-more-than-meets-the-eye

Wang, W., Niu, Y., & Jia, Q. (2022). Physical Therapy as a Promising Treatment for osteoarthritis: a Narrative Review. Frontiers in Physiology, 13(13). https://doi.org/10.3389/fphys.2022.1011407

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Posted

2024-09-12