By Julian Macdonald
When I was young, I lacked a dream to chase. My head was always in the clouds, without a goal on the horizon to pursue. My days were filled with school, television, and sleep. There weren’t a lot of things that piqued my interest.
My parents recognized my dilemma and tried to get me involved with any hobby or sport possible. As a result, I wore many hats as a child, painter, potter, and even a boy scout. However, it was a trip to the nearby local theatre that filled me with dread. I asked my dad to please call off the meeting with the director, but he wouldn’t. He was certain that he had found it for me: the spark. It brings me no joy to admit he was, in fact, right.
No matter how hard I tried not to enjoy performing, it intrigued me. I had found my home… my passion. Nothing makes me so excited or fulfilled as when I am singing on a stage. My first audition became the catalyst of many to come.
I didn’t have many problems pursuing theater as my life’s work - not stage fright, not passion, not even hemophilia. When it came to my bleeding disorder, I was fortunate. Although I have severe hemophilia A, I had not experienced a joint bleed or any extreme complication until I was in middle school. I did have an inhibitor at an early age, but after almost three years of immune tolerance therapy, my inhibitor was eradicated with no long-lasting effects.
I started becoming aware of how my condition might change how I am perceived by others. I learned it was common not to disclose one’s diagnosis of hemophilia to some people for fear of discrimination. It was important to keep that information confidential unless disclosure was necessary. Unfortunately, I did a remarkably terrible job of keeping it secret. As a kid, I experimented with the idea of making it a part of my social identity.
As I grew older, I was desperate to find somewhere I belonged. Hemophilia camp was that place for me. I didn’t know it at the time, but being around other people who dealt with the same condition I have was a critical part of finding myself. It helped me build confidence and understand how my body functioned on a practical level. At camp, I learned to self-infuse, thereby becoming entrusted with my own treatments. Three times a week on my own, I maintained my regular infusion schedule.
My teenage years were complicated. I became tired of the prophy treatments, and since I had not experienced any serious bleeds, I did not see the point in continuing to infuse nearly every other day since nothing bad ever happened. It became a battle every few days for me to even acknowledge my own disorder.
I enjoyed forgetting about it, but I was always reminded that I was not cured, just fortunate. I got to where I was learning my limits. I would neglect treatment and infuse when I felt a symptom begin to appear. I knew how long I could go without infusing and could sense when a bleed was about to happen. Playing this game, I thought I could do whatever I wanted and that I would never have any consequences. When something had been a part of my life for so long, it was hard to realize that it could complicate my future. Hemophilia was always there; why would it get worse?
I never thought about what a bleeding disorder might mean for my career or what might happen when I moved out on my own. It only takes one terrible bleed to change how active you can be, and in my line of work, mobility was the name of the game. It was just another thing I had not considered. In theatre, anything can go wrong. From mishaps on stage and demanding schedules to long hours of repetitive physical activity, my bleeding disorder could become problematic.
Moving out of my parent’s house and pursuing the last years of college led to a great deal of change, including a change of blood clotting product. The limits I had tested for myself became irrelevant. I had been on the same product for nearly twenty years, and I was still having issues maintaining a treatment schedule. New medication was uncharted territory. Initially it was not as effective and there were a great deal of mishaps, bleeds, and medical scares that I hadn’t experienced before.
Toward the end of my college career, I started to achieve meaningful growth as a person and a performer. I was offered my first professional opportunity in the theatre. I struggled for years trying to force myself out of mistreating my old medical routine and I knew my lack-of routine was unsustainable. If I was going to pursue my future, I had to confront what I had been running from: my own bleeding disorder. Pretending it did not exist was never going to secure my physical health, but regular medication would.
I still had issues keeping my hemophilia under control, but I was having more success with the new medication. It turned out being compliant with a treatment plan kept the symptoms at bay pretty effectively.
Having graduated college, I feel there are a great deal of possibilities open to me that were not before. As a full-time performer, I now find myself in a constant rehearsal cycle, and it is exhilarating. Through intense dance routines, long hours of movement, and still having the energy to be with friends, my disorder does not get in the way.
I spend every day among accomplished professionals with the same devotion to their art the way that I have come to appreciate. In achieving compliance with my medication, I have found confidence I didn’t know I could have.
My disorder hadn’t been getting in my way; it was me. The liberating part about actively confronting my diagnosis was that I could free myself of the obstacles that kept me subdued. Having a medical diagnosis was never something I could control, and I spent a long time running from it. However, I can take charge of my own future. It turns out a big part of that was as simple as a little discomfort and inconvenience in exchange for a world of possibilities.
Patient Navigation Program
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
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