By Jacey Gonzalez
Chronic... Lifelong… Everlasting…
These are words that have been used to describe my bleeding disorder especially when explaining what I couldn’t do, where I couldn’t go, or what I was limited to. However, looking back on my life, I have realized through the highs and lows of living with a bleeding disorder, I have been given a chronic life, not a lifeless life.
Growing up, my mother and I planned everything around what was going on with my health. Where I would go to school, what sports I would play, where and with whom I could travel. It seemed we always had everything planned to a tee. My life revolved around my health – first leukemia, with which I was diagnosed at age 3, then on my platelet disorder, and then around my von Willebrand Disease. I was hyper-aware that while I was an average child, medically, I was different.
I was always inspired to do the absolute most with my life and to curse anyone who thought otherwise. I was strong, I was resilient, but by the ripe age of 16, I was completely done caring about my medical needs. This was the only time I lashed out against my health issues.
Call it teen angst, call it independence – no matter what you call it, I wanted nothing to do with managing my bleeding disorder. I grew up as the “cancer kid” and I wanted nothing more than to spite that moniker for the rest of my life. It defined me, almost too much. Kids are mean, and they notice when you’re different. There is something almost cruel about the innocence and ignorance of children who don’t have to worry about their medical limitations. The impact of this didn’t quite dawn on me until my junior year of high school.
Junior year – my first chance to go to prom, the year I took my SATs, the year I fell in love for the first time. We lost our insurance that year and got stuck with the worst state-monitored HMO plan we could have possibly imagined. So much was going on all at once and with all that change, this was the year I decided I wanted to be normal. I didn’t even want to worry or think about my bleeding disorder.
Isn’t that what every person with a chronic illness wants? To be normal, to not question if basic things are safe, to go with the flow and not inconvenience the people around you. I was a varsity athlete, I had the best friends, and I thought to myself, “If I believe I am normal enough, everyone else will too.”
I made mistakes. I took my (very fragile) health into my own hands and decided I was going to live an unencumbered life and pretend my bleeding disorder didn’t exist. Come what may! To save you the trouble of rehashing all of my mistakes, I’ll leave you with my final thought after that turbulent year.
I’m not normal, and I was never meant to be.
People with chronic illnesses aren’t normal. We aren’t meant to be. We are a tenacious bunch who for whatever genetic reason, have an ailment that impacts our lives. We are stronger than most, we persevere more than anyone should ever have to, and we are brave.
We put a smile on our face and have Emmy-worthy acting skills making everyone believe we are okay. Even if we may not always feel like it, we make sure everyone knows we are just fine. Every time I have to take a butterfly needle and find a vein, I am filled with melancholy. But I do it – we have to. We weren’t given a choice in the matter.
Having a chronic illness is not only physically exhausting but mentally as well. It’s almost as if my brain wants to give up, but my body won’t let it. Then as soon as my body fails me, my mind compensates. It’s a constant teeter-totter of what will cause you duress on any given day – my brain or my body. Sometimes it takes you to the deepest darkest places, and there’s almost no semblance of light to cling to.
But where we don’t have light, we have hope. We are so fortunate to live in an age where effective medications are available for us. Where we have competent doctors helping us manage our lives. Where our diagnosis doesn’t mean impending death. We can call our friends we met at camp or through conferences and ask for help during our difficult times. We are only a Facebook message away from contacting someone who is going through the same thing. We are the lucky ones. Not everyone in other chronic illness communities is as lucky. We are fortunate to be part of a community where we are loved, understood, accepted, and supported.
Chronic illnesses aren’t easy. I’ve changed some of my life goals to be able to work with what I am physically able to do. I have come to terms with the way my bleeding disorder has shaped my life. I have also come to terms that I am not the same carefree kid I once was, but those losses have been replaced with a responsibility that I am part of a changing medical landscape. Hoping that it will one day help other people, I am contributing to advocacy and research. My efforts are making a change not only in my small rare disease community but in the greater population of rare diseases.
We are so fortunate to have the opportunity to be directly involved in the issues that impact us regularly. Whether the issues are regarding new medications, new legislation, or new insurance regulations, we have the power to better our own life as well as the lives of others in our community.
We, as a community, are not normal. We were never meant to be. Normalcy is a construct with expectations that are inherently out of reach. Our version of normal though – our chronic life – is so full of color and hope and perseverance, it’s better than any version of “normal” ever described. We are history, we are the future, and we are living amazing lives full of challenges and triumphs and growth of character. Even with a disorder where something is missing, we are whole.
I am a Star Wars nerd, an avid reader, and a proud mom to many succulent plants. I’m a sister, a daughter, an advocate.
I am not my disorder. I am not normal. My chronic life is not lifeless.
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