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Managing the emotional responses of living with a chronic illness

Caitlin McGinnis shares her experience of living with a chronic illness and the emotional impact it has had on her life.

Caitlin McGinnis while taking prednisone

Living with a chronic illness can trigger a variety of emotional responses for an individual. As we know, people react to situations differently and may not exhibit the same response. However, many may respond with disbelief, fear, anger, guilt, depression, and/or grief. I remember when I was diagnosed with Ulcerative Colitis. I was 22 years old and in my junior year of college. I was living on campus with a roommate who ended up being my best friend. The diagnosis itself was pretty easy considering my family history. I was immediately put on multiple medications. Even though I was adherent to my medication management, it was very difficult taking good care of myself. I was still staying out late, partying, and drinking. I was smoking on occasion. My nutrition was poor, as I would eat out a lot at the college cafeteria. I was in disbelief and in denial of my disease. I did not understand the severity of it. 

Recently, I attended a Social Work conference on the topic of transition from adolescence to adulthood in the health care setting. Primary discussion was how to prepare adolescence with chronic illnesses in the transition from the pediatric treatment to the adult side. One of the conversations resonated with me regarding the transition teens have when they go to college and how it affects their health. This is similar to what happened to me despite not being diagnosed as an adolescent. It can be very challenging for young adults to make this transition while maintaining their health and fitting in with other college students. 

I think I was fortunate in a way to be diagnosed when I was because I avoided the awkward and uncomfortable teenage years. I was already an adult and had established friendships. My illness didn’t necessarily interfere or ruin anything, at least at first. Going to the infusion clinic to receive my Remicade treatment became part of my daily routine. I fit it into my work, internship, and school schedule. I did what I had to do and didn’t really think twice about it. There were definitely frustrating days with all the pills I had to take, the stomach and joint pain, the insomnia, and frequent bathroom trips.

Fear didn’t come long after. With no results from Remicade or my oral medication, prednisone became a part of my life. Besides the awful mood swings, I felt pretty good on prednisone. I felt insecure at times with my puffy cheeks and belly. Fear set in about two years into my chronic illness. By this time, I was 24 years old working at a mental health agency as a social worker. I did “okay” for a few months. My “okay” had different meanings throughout the years. I often brushed my symptoms to the side and had a difficult time distinguishing the severity of them. One afternoon after a work staff meeting where I spent majority of the meeting in the restroom, everyone said I didn’t look well and that I should consider going to the Emergency Room. I brushed it off but inside, I became fearful. Fear sank in as my parents drove me to the ER. Fear sank in as I lay on a stretcher in the middle of the ER for 14 hours. Fear sank in as hours turned into days and days turned into weeks. Fear sank in when my doctor came in and said he didn’t know what else to do. Fear sank in when a surgeon came in. Fear had me in limbo. I did not understand the severity of my illness or the poor prognosis it left me. 

Relief became an emotion when I had my total colectomy. As much as I feared what was to come, I was relieved that the organ killing me would be removed. And I hoped for better days to come and to physically feel better. Being in the hospital is a safe zone. I wanted to go home so bad but wasn’t ready for the silence and loneliness. At least in the hospital, you had someone coming in every half or so checking vitals and giving pain meds. If I needed anything, there was always someone trained ready to help me. When I went home, I had a great support system of my parents, my brother, and all my close friends, and even some people from church. My mom went back to work, which left my dad with the responsibility of taking care of me at home during those hours. He was great at it. He took me on drives around the neighborhood and to run errands just so I could get out of the house. He picked up all my medication refills. My mom took over as soon as she came home and checked on me throughout the day. My brother visited daily and did everything to make me laugh. Depression didn’t quite hit me until I was home. Every morning, I would cry in my dad’s lap. All the pain medication and antibiotics didn’t help with my emotions but neither did having to have my mom help me in the shower and to get dressed every day. I felt hopeless and sad all the time. 

I finally decided to see a therapist specializing in chronic medical illnesses. My dad drove me to my appointments and waited for me to finish. I only went a few times but it was helpful to let all my emotions out to a stranger. I had done enough complaining to my family and friends. I eventually went back to a therapist about a year or so later once my hospitalizations and surgeries kept coming. The depression got better and eventually was able to resume my daily routine without being sad and angry all the time. I still have days where I feel upset and wonder why this had to happen to me. Most often than not, I feel grateful to be alive, relatively healthy and have the ability to live a life that I want. These emotions are all normal when you’re living with a chronic illness and/or have had many surgeries and hospitalizations. I encourage you to let the emotions take their course and if it becomes too much, then please see someone that you can talk to and work through the feelings. There are always brighter days to come.

Visit Caitlin over at her blog site myjourneywithstan.wordpress.com 

If you feel that sharing your story could help others, then we would love to hear from you.  Please send your story to mail@eakin.co.uk