Blog #5: My Diagnosis Experience

There are parts of my story that may seem bleak and desperate to you. But as you read, I hope that you will realize that the purpose of me telling my story is to show that while living with an autoimmune condition is certainly tough at times, with the right mindset and support system, one can and will get through it and even thrive. As hard as it may be at the time of a negative medical diagnosis to keep a broader perspective, your condition does not define you: you are always more than your disease.

When I was a mere seven years old, I missed several weeks of second grade because I started experiencing horrific and terrifying symptoms. For seemingly no reason at all I would double over with pain and cramps. I couldn't stop going to the bathroom, and when I did, I experienced bleeding.

Now, you may be thinking that from a child’s perspective—or really from anyone’s perspective—this would be extremely nerve wrecking. You are right! These symptoms led to constant visits to doctors to undergo testing and so in short order I came to dread every appointment. Even so, I am told by my parents, sibling, and grandparents that I always kept a smile on my face and was beyond brave. I think this was why I never felt as if I were suffering from a chronic, debilitating autoimmune condition. I was so fortunate to have a loving family and caring friends who always kept my spirits up with surprise gifts of stickers, markers, glitter, and stuffed animals in every shape, color and size to help me get through the long days at home when I was struggling to gain remission.

I remember losing myself in the Max and Ruby series based on the books by Rosemary Wells. Everyday I would watch for hours on repeat because it took me to a place of fun and fantasy and diverted my attention from the realities I was dealing with. The day-to-day life of two sibling bunny rabbits was all the adventure I needed at that point in my childhood, and I craved the benevolent simplicity the show had to offer.With a lot of hard work on my part in terms of adjusting my diet, taking medication religiously and on time even at hours a child would never be awake, and visiting the doctor weekly or sometimes bi-weekly for blood tests, I got to a manageable place with my UC.

But my remission did not last long, and in third grade, I was admitted to the hospital for two weeks because my symptoms were terrifyingly back. I had to undergo more testing and try various medicinal regimes to get me symptom free again. This hospital stay happened to fall during one of my favorite holidays, Halloween. Having to “dress up” in the hospital with whatever was on hand and parade around the pediatric wing with an IV attached to my arm was certainly a low point in my ten years of living with UC. I kept thinking, “Why am I here? Why can’t I go trick or treating with my friends? Why can’t I even go outside?” because at the time I did not understand exactly what was going on. And now looking back, I think that was a blessing in disguise. In frustration and disappointment, I abruptly ran away from the parade and straight into my room, precariously trailing my IV behind me the whole time. By the time I slammed the door to my room, the IV machine hooked to me started to beep angrily and incessantly until the nurses reset it. They were so kind and saw I was terribly upset, so they brought me a heavy bag of candy to cheer me up.

It was at this moment I realized that even the smallest gestures can spread kindness and bring empathy to bleak moments. That same stay, volunteers came with stuffed animals to further cheer me up because what child wants to be stuck in a hospital room hooked up to an IV and beeping machines? It was at this moment that I picked out my most prized possession of all time, Moosie. I’ll let you guess what kind of stuffed animal he is. I have had this friend with me since November 2014 and even though I am now seventeen years old, I can assure you that I will have Moosie with me for the rest of my life: he’s bound for college with me and adventures beyond. After this hospital stay, we got better control over my acute UC symptoms. Now it was time to learn how to live a real life with the disease.