In Sickness and In Health
What does it mean to be healthy? And what does it mean to be well? Is health a moral obligation? An ideal to strive for? Health is ingrained into every part of our lives. Being healthy or becoming healthy is part of the drive to survive. For human beings, health is primal. So if you are not healthy, and if you cannot ever be fully healthy, what does that make you?
I was born on October 15th, 1997, on a full moon, with a birth defect in my bladder that can result in kidney damage and, if untreated, high blood pressure. I was diagnosed with kidney damage and high blood pressure when I was 11. It reads in my medical chart as secondary hypertension caused by chronic kidney disease, managed by medication. I vividly remember the day I was diagnosed. I was sitting in the lab joking with the technician about kidney beans while I looked at a grainy image of my kidneys, seeing them for the first time. Later that day at the same hospital, I held my new medication in my hands. I felt a new connection to my body and to the life-sustaining medication it now depended on. My kidneys were now chronically diseased, for presumably forever.
A year and a half later, I had major surgery on my bladder at Children’s Hospital in St. Paul. I was visited by doctors, family, friends, and one very unfriendly therapy dog, but no one ever told me I would or could be healthy. They knew that that was out of the realm of possibility for me. I eventually recovered from the wounds of my surgery, but I left that hospital with the diagnosis of a lifelong, chronic illness, and a brand new perspective on health and healthcare.
Even though I was fairly young when I was diagnosed, I was still plagued with guilt and anxiety about my healthcare and its cost. My parents estimate the surgery cost them around $5,000 after insurance, which they paid off in installments. I had to be ferried to doctor’s appointments in the middle of the day, where I missed school to undergo expensive and time-consuming tests. My medications, which I was prescribed in late 2008, cost between $10–20/month each after insurance. Without insurance, they cost $96/month or $1,152/year. Before the passage of the Affordable Care Act in 2010, I feared for my ability to get health insurance based on my brand-new, pre-existing condition. I listened to political rhetoric that referred to sick people as a burden on the healthcare system. I remember receiving this second diagnosis just as clearly as my first: I was ill, and I was a burden.
In spite of the challenges of my illness and its cost, my parents eventually managed to make ends meet and I gradually learned to live with my illness. Four years after my surgery, my parents bought me a stuffed toy shaped like a kidney for Christmas. It still sits in my bedroom to this day. Its name is kidney bean. My health is imperfect, and barring a miracle it always will be. I have learned how to navigate the uncertainty and the unfairness of the American healthcare system, but I have rejected the notion that I am a burden. The pain I endured and the diagnosis I have lived with have taught me that the health care system is not tailored to meet the needs of the ill. I am an ordinary person with specific needs, and I believe that the health system in which I seek care should be oriented towards those needs.
Healthcare in the United States is, generally speaking, designed to manage risk. The risk, in this case, is those people within the system that need high levels of care, and with it high levels of costly services. This is part of the reason why the system rewards healthy people. There are countless examples of wellness programs within insurance networks. Yet, many determinants of health are almost entirely out of an individual’s control. Race, income, family background, geography, and genetics are very hard if not impossible to change, and the role they play in our health cannot be overstated.
According to the Minnesota Health Access Survey, 349,000 people were uninsured in the state in 2017. Of those people, 13.9% were people of color. The most likely to be uninsured were low-income indigenous people and people of color, whose mortality rates are two to four times higher than their white counterparts. Minnesotans are very proud of the health outcomes of our state, and perhaps we should be. But we also inherited a society with a healthcare system that viewed (and still views) health as a marker of superior moral character. So, what happens if that society also works within systems that ensure some people are unhealthier than others, through no fault of their own?
There is a term for what people will do to justify injustice. Studies of the Just World Hypothesis have shown that people, when confronted with someone who is a victim of injustice which they are helpless to fix, will deliberately lower their capacity to empathize with that person. So, a society that demands health while ensuring that some will never be healthy will develop a tendency to pathologize and dehumanize those people. Some chronically ill people became that way through genetic chance or accident, but for many others, the centuries of inherited trauma, poverty, and lack of access to affordable healthcare have ensured that they will never be fully healthy. Our healthcare system needs to be oriented towards these people. They use the healthcare system the most not because they are a burden on it, but because they need it to do what it was designed to do. They need it to help them treat their illnesses, as thoroughly as necessary, for as long as necessary.
I don’t know where I fall on the spectrum of health, but I know I will never be fully healthy. My health is often at the mercy of medications, doctors, insurance companies, lawmakers, and the grace of my body. I don’t believe that everything happens for a reason, but I do believe that there are lessons in being a burden. I am proud to be one. I am proud to be able to depend on others and to know my body well enough to advocate for it.
I and the many other people who live with chronic health conditions have wisdom to offer the healthcare system. They would do well to listen to it. I believe they would listen to it if they looked at us as fully realized beings to be lovingly cared for, rather than burdensome, expensive problems to be solved. That is what my bad, burdensome health has taught me.
