According to the American Hospital Association, an estimated 133 million Americans — nearly half the population — suffer from at least one chronic illness. This figure is 15 million higher than just a decade ago, and by 2030, this number is expected to reach 170 million. Living with chronic illness is a daily battle and attempting to be a working artist while being consumed by its madness is not easy. I do get to work from home and I won’t lie, avoiding the daily decision making process on what I’ll be wearing to work is one of the highlights of my life. Pajamas rule my wardrobe and they make it easier to deal with the bouts of fatigue that can creep up at any moment, since I can go from functional to bed-ridden at the drop of a hat.
I have ulcerative colitis (UC) and rheumatoid arthritis (RA). UC, a chronic inflammatory bowel disease that causes inflammation in the digestive tract, is probably the most annoying to have to factor into my day. I must be at least two seconds away from a bathroom at all times and in a flare-up, I will most likely spend the majority of my day having long winded conversations with the porcelain fixture attached to the floor of the lavatory.
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Rheumatoid arthritis, a chronic inflammatory disorder affecting many joints, including those in the hands and feet, is the most frightening for me. It brings up questions and concerns about art making and how long my ability to build and create will remain in my hands. As an interdisciplinary artist, I work in multiple mediums and I can’t imagine creating without the ability to be elbow deep in my pieces. Over time, the inflammation associated with RA can cause bone erosion and joint deformities which could leave me immobile. Though I’m sure that when the day comes that I can no longer use my hands to create, I will find a way to make what moves me; but some days the pain can be so unbearable that I’m unable to see the possibilities.
When the profits from every sale are dumped right back into medical costs, what does the balance of surviving and creating even look like? I’m doing all that I can to keep these monsters at bay. I’ve seen so many doctors that I’ve lost count. I’ve been used as a guinea pig to test an elaborate array of costly medications which could keep my autoimmune diseases from ripping through my body with their determined claws. I’ve also been left so broke by it, that I wondered if it was all worth it.
The chronic fatigue has been difficult to navigate. Especially while I was completing my BFA in fine art. The world just isn’t set up for those with chronic illness. I’m thankful for so many instructors who ignored the ableist policies and allowed me the flexibility I needed to explore the artist I was becoming. They made the anxiety riddled and painful days much more bearable but I often think of those who don’t have the allies they need at their institutions. I also can’t help but think of the institutions themselves and how they have the ability to usher in a new and inclusive future, yet choose to sit on the sidelines and allow the status quo to continue demolishing one dream after another.
People like me have to find creative ways to navigate this rigidity and on most occasions we are fighting and pushing against the rules which were certainly not written with us in mind. Though we can apply for accommodations, many can’t afford healthcare or they have strange and unusual insurance policies which only hinder their ability to communicate their needs within the system’s guidelines. I’ve been lucky and unlucky in that space. I have military health insurance but I don’t think that makes it all better. Dealing with Tricare and the Veterans Affairs Department (VA) is like attempting to build a ship in a bottle. It’s tedious, complex, and nearly impossible for most.
I don’t think I’ll ever stop being frightened by how my illnesses will consume my body and mind. I suppose that’s the most “normal” part of all of it. All I can do is continue on and hope that I will find creative solutions and jobs that allow me to flourish my art practice with the malleability I require. Making art is what allows me to feel a spark of relief from the all consuming dread that inevitably surfaces when I think about what the future means for me and my survival in a capitalistic society. I must remind myself daily that creating is my motivation — by any means necessary.