Chronic illness is well hidden from society.
Before I had a name for what ailed my body, I thought of myself as dehydrated and out of shape. I believed that the physical discomfort I’d experienced for years — numbness, pain, tingling and pins-and-needles sensations throughout my body — must be traceable to a cause of my own making. At that time, I looked at chronic illness as an outsider. It was a thing that happened to others, not to me.
That changed on Christmas Eve 2014, when a neurologist at NewYork-Presbyterian Hospital read my M.R.I. and confirmed that I had relapsing-remitting multiple sclerosis. This form of the disease, as the name implies, is characterized by unexpected flare-ups and periods of remission.
I was 26. I realized right then that my dream of being an artist, and the unconventional lifestyle I expected along with it, was over before it began. Four months after my diagnosis, I received my first infusion of high-dose intravenous steroids. In the fall of 2015, under the care of a neurologist, I began a monthly intravenous treatment of medication that blocks immune cells from entering the brain and spinal cord. I travel 65 miles to a site in the Hudson Valley for the infusion therapy.
Treatment has been successful, and I have remained in a state of remission while taking it as recommended — every 28 days, indefinitely. But even today, nine years into managing the illness, I struggle with the chronic nature of my condition. I am always aware that if lose my access to regular treatment, I’ll be at risk of severe disability.
Though I don’t like to admit it, every choice I make is determined by my need to maintain uninterrupted access to medical care. This has made my illness the truest navigational force of my life. Rather than orient myself to the cycle of the moon, I orient myself to the cycle of infusion. And it has become a system in my creative work. My body is a clock.
Every 28 days, I point the camera toward myself to document my illness and care. I have used my time as a patient in the infusion suite, a place where I sometimes feel powerless, to reclaim my autonomy as an artist and photographer.
In the infusion suite, both my body and my mind become containers for information. My body holds the new intelligence of the medical drip. As the fluid flows through my body and into my bloodstream, my mind is usually inundated with information from the staff.
Since my diagnosis I’ve thought often of my aunt, who has lived with progressive multiple sclerosis for years. Without health insurance, she did not have access to advanced imaging, diagnostic testing, medication or lifestyle guidance until her disease was very advanced. Instead, she found ways to self-medicate. Now in her early 60s, she is immobile, hardly able to speak and unable to navigate the social programs for which she is eligible.
Whether or not we’re aware of it, we all live in fragile bodies that require tremendous care and attention to function. Each and every one of us exists on a spectrum of illness, often dipping in and out of it. And yet, we also exist in a culture where it is taboo to talk about being sick, and the taboo can allow shame to fester among those who are chronically ill.
Still, I choose not to dwell on the scarier moments of managing the disease — the psychological burden and angst caused by my symptoms as well as the precarity and inhumanity of health care access and costs in the United States. The sophisticated treatments that exist today make this the best time in history to live with multiple sclerosis — if you can get access to care. The politics of this cannot be avoided. To be sick is political.
Maintaining all the pieces to continue to receive care in the current system is exhausting and stressful to navigate. Patient education and advocacy have been critical to my health care experience.
I came of age and of illness after the Obama-era Affordable Care Act established protections for people with pre-existing and chronic conditions. Yet even with this framework and my participation in private insurance, now supplemented by my employer, the recurring thought of losing my coverage and being denied my medication causes me much distress.
We are not prepared for problems that cannot be solved, and living with that reality is part of being chronically ill. There is no practical end. How do we break the silence to begin to discuss pain, loss, a broken health insurance economy, overworked nurses and the precarity of care?
With the coming 2024 presidential election, there will surely be renewed calls to repeal and replace Obamacare. The threat and fear of losing access to care will loom for millions. Even with the recent and ongoing events of the Covid pandemic, an adequate and sustainable system remains out of reach. Hundreds of thousands of Americans have already lost and are still losing access to care as Medicaid pandemic protections expire.
Political responses to this crisis of care matter. But so do personal and artistic ones. What if chronic illness, long concealed and misrepresented by popular culture, was made more visible? What if it was more often a subject for art?