Living with Ulcerative Colitis is not easy and at times torturous. I celebrate every remission. It is important to consider what chronic illness means. Such a condition does not only bring the overt symptoms associated with illness; as well as the “invisible” symptoms--silent emotional pain, fatigue, embarrassment that may result in mood disorders such as depression as well as feelings of inferiority. Chronic illness can even profoundly impact one’s ability to even participate in the activities of daily living further eliciting feeling of inferiority. In addition, such a diagnosis can affect every aspect of one’s life, including family and loved ones. Medical management has vastly overlooked this, yet this can profoundly affect the trajectory of patient care. In fact, Golics et al., (2013) reiterates this message stating that the quality of family life as it relates to the effects of a chronic illness has been woefully neglected. They further assert that this must be addressed in order to provide the necessary support systems for both patient and family (Golics et al., 2013). My experience supports and agrees.
My journey of self-actualization would be incomplete without a discussion of my experience with Ulcerative Colitis. My nephew’s recent diagnosis at age 8 reminded me; I was suffering with my undiagnosed battle since about the same age. It was not until I was in college that I truly realized the impact of this disease and I finally received a diagnosis. During my college years, I was plagued with a condition that was exacerbated by stress which was then causing stress—almost like a game without end. For years I felt the condition was in control. At my worst point, I weighed about 100 pounds, my condition so out of control that for a summer I was confined at home. Enough was enough, something had to change, I had to gain greater control of my condition, because there was far too much I needed to accomplish. I had to learn to “control the controllables”!! What could I control—my diet, exercise and many opportunities to decrease stress!! Success!! Psychologist, Vicki Helgeson states that when dealing with a chronic condition, individuals who “were in control” had a more positive stance, affecting the trajectory of their illness through better patient compliance (Ellison, 2019). In addition, (Margolis et al, 2021), highlights mind-body connection, stating brain imaging shows gut stimulation can activate emotional regulations centers in the brain, resulting in mood deregulation.
Based on my experience with chronic illness, I am uniquely aware of the affects of such a condition on the individual and their family. I am also uniquely aware of the emotional toll such a condition can have on the individual. That is why, I recognized the importance of medical family therapy. Chronic conditions not only affect the individual, but also perturbs the family unit. Often, the family unit must be considered as the individual and the family attempts to navigate the often-turbulent waters of a chronic disease management.
References
Ellison, K. (2019, November 19). Living with chronic illness: Why some cope and others don't. Knowable Magazine | Annual Reviews. Retrieved November 16, 2021, from https://knowablemagazine.org/article/mind/2019/psychological-effects-of-chronic-illness.
Golics, C. J., Basra, M., Salek, M., & Finlay, A. (2013). The impact of patients' chronic disease on family quality of life: An experience from 26 specialties. International Journal of General Medicine, 787–798. https://doi.org/10.2147/ijgm.s45156
Margolis, K. G., Cryan, J. F., & Mayer, E. A. (2021). The microbiota-gut-brain axis: From motility to mood. Gastroenterology, 160(5), 1486–1501. https://doi.org/10.1053/j.gastro.2020.10.066