“I’m not sure why, every night, my father asked me what story I wanted to read before bed because the answer was always the same. I would go to the pile of books in my room, all except one had a thin layer of dust enveloping the cover. My little hands grabbed the big yellow book on top, and I flipped to the well-worn page that read, ‘Curious George Goes to the Hospital.’ Throughout my elementary school years, every boo-boo, flu-shot, and cold was accompanied by reassuring memories of how kind Dr. Baker and Nurse Carol were with George.
These experiences only further cemented my dreams of becoming a pediatrician. It wasn’t until the fourth grade I experienced being sick for more than a couple of days, and although I did not know it then, the lessons I learned from Curious George would carry me through battling multiple chronic illnesses.
With every battle I fought, my support system grew. Every person who helped me made sure I knew I was capable of anything I put my mind to. When I first got sick in the fourth grade with hypothyroidism, it was just me and my parents. When I began having leg issues caused by Complex Regional Pain Syndrome, my orthopedist, Dr. May, stepped up and did everything in his power to get me walking again. During a hospital admission my nurse, Nancy, advocated for my needs when I was too ill to do so myself. Looking back, I noticed I had my own nurse Carol, Dr. Baker, and Man in the yellow hat by my side. As I grew up, I made an effort to treat everyone equally despite their varying physical or mental capabilities because my support system did the same for me.
One of my fondest memories was at my aunt’s wedding back in 2015. After the ceremony, we all gathered in the dance hall, nearly everyone had their shoes off and were dancing the night away. That was, except me and my younger cousin, Samantha. At the time, I had a cast on my leg due to ongoing orthopedic issues, and although I could walk and dance on my cast, I was embarrassed to do so. Across the room, Samantha sat alone in her wheelchair, and at that moment I decided no one had told me not to dance, and although my cousin had spina bifida, no one said you can’t dance in a wheelchair.
With her permission, I wheeled her onto the dance floor, dropped my crutch off to the side, and we danced like no one was watching. The sound of Samantha’s laugh and the smile across her face brought tears of happiness to her parents, the bride and groom, and nearly everyone there, just like how Curious George helped Betsy laugh and smile even though she was sick.
It wasn’t until my sophomore year of high school when my trust in doctors and the healthcare system was tested. I officially had stumped my medical team, and it was then I had to travel across the country for treatment of my POTS. I was so optimistic this treatment program would benefit me greatly, and although symptomatically I improved, the effects of the program’s philosophy were detrimental to my faith in doctors and the healthcare system. Every day in the clinic I felt invalidated, and their philosophy did not align with my beliefs. When I completed treatment, I threw away all my dreams of becoming a doctor. I could never be a part of the system that hurt me and too many others.
I spent the next summer as a communications intern. When summer came to an end and I began my junior year, I went through some of the toughest months of my life. I spent days at a time in the hospital when I should have been hanging out with my peers and touring colleges. It was the first time I was back in a medical environment since the experience I had during my sophomore year. The trauma I experienced then still affected me and made hospital admissions even harder. At the time I had no idea the positives these admissions would surprisingly bring.
I vividly remember my hospital stay in January of 2020, as it was a turning point for me mentally. I was very sick and I relied on the nurses for almost everything, and without hesitation, they made my bed, held my hair back, lifted my spirits, held my hand walking to the bathroom, and assisted me in doing anything and everything. My nurse, Nancy, was one of the most incredible nurses I have ever met. After nearly a week, I was feeling better and was ready to go home that evening. To keep me comfortable, I was given a drug to help my nausea, and unfortunately, I had an adverse reaction that caused dystonia. A dystonic reaction is characterized by uncontrollable and involuntary movements of your face, neck, and extremities. The doctors still insisted on my discharge that evening despite the condition I was in. Unsure of what would happen, I cried in fear of going home.
Nancy came in seeing me in distress and immediately knelt beside my bed. She held my hand and told me, ‘There is no way I would ever send any of my patients home in your condition, and if I did, I would be ashamed to call myself a nurse. Doctors have their own agenda, but we nurses listen to our patients and help them feel safe and comfortable in the hospital.’ Nancy had no idea the lasting impact those words would have on me, and at the time, neither did I.
I came home the following day after Nancy advocated for my needs and insisted I needed to be monitored for another night. I felt a sense of relief when I came home. Now, I realize the way Nancy and all the other nurses took care of me allowed me to trust the health care system again and reclaim my passion for becoming a healthcare provider. Rather than a doctor, I now hope to become a nurse. Within days, I was researching nursing programs, what it took to be a nurse, and different types of nurses. I even reached out to a family friend who was in nursing school and asked her about her experience.
From reading Curious George Goes to the Hospital, I have learned healing requires much more than a prescription. It requires being surrounded by those who love you unconditionally and a care team that is curious and driven. Most importantly, it requires being able to learn from every experience and use it for good.
After the many experiences I had in the medical field as a patient, both good and bad, I decided a change needed to happen. Those like me with Ehlers Danlos Syndrome and all that it brings are constantly misdiagnosed, not believed, and dismissed. As a nurse and future nurse practitioner, I will be a part of that change. A change that involves better education on EDS as well as changing the way we view invisible illnesses.
My advice to those with invisible illnesses is no matter who or how many people dismiss you or don’t believe you, never stop believing yourself. Your symptoms are real and valid, never forget that. And to those who have a loved one with an invisible illness, always choose to believe them, choose to validate them, and choose to love them unconditionally.”
This story was submitted to Love What Matters by Sonia Cardeiro. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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