Fighting to Live: Navigating the American Health Care System with a Chronic Illness


I’ve been watching the news lately to find out when I’m going to die. My life expectancy is directly related to the Affordable Care Act.

I have Ehlers-Danlos Syndrome (Type III), which affects connective tissue. It is incurable. Because there is connective tissue in every major organ system in the body, I have a lot of related conditions that affect my heart, lungs, digestive system, joints, and the other parts of my body. Every day I take a few medications, keep to a restrictive diet, and limit physical activity as much as I can. Every night I take seven more medications and try to sleep through the physical aches the day has caused. I see six specialists at varying degrees of frequency. I get minor stomach surgery every six months. Somewhere in between the daily work of keeping myself alive, I manage to squeeze in being a full-time Ph.D. student.
In late 2008, the only way a person over 18 years of age could use their parents’ insurance was if they were actively registered in college.
Apparently, I’ve been sick my whole life, but I didn’t always know it. One day, in May 2008, two years before the Affordable Care Act was signed, I woke up in severe pain. It never went away. It was finals week of my junior year of college, now just a blur of blood tests and academic tests; showing up for exams between ultrasounds. The doctors treated me as best they could, but they didn’t have any answers. It was worse when I returned to school in September. It didn’t take long before I was storyphoto1unable to keep up. After long discussions with my doctors and advisors, I was faced with a choice – stay registered in school and get four F's or take medical leave and lose my insurance. In late 2008, the only way a person over 18 years of age could use their parents’ insurance was if they were actively registered in college. Anyone who needed to temporarily leave school for any reason immediately had their insurance revoked. Luckily, that particular crack in the system was fixed via legislation before the ACA, but it created a very dire predicament for countless students for years. I managed to get healthy enough to return the following semester. In the meantime, the global economy had collapsed. On December 22, 2009, I officially became a graduate of the University of Pennsylvania. Nine days later, December 31, 2009, at 11:59 pm, my health insurance was terminated. Jobs were scarce due to the crash and the few jobs that did offer insurance required 90 days of work before it started. There was no possible way I’d be able to physically work without medication for that long, so I was left with only one option: apply for Medicaid. I went from being a first generation college student to Ivy League Graduate to welfare recipient in a matter of months. It was not because I was unwilling to work, not because I didn’t have a skill set to offer, not even because I was disabled, but because there was no infrastructure in place to support willing, skilled, and disabled people.
It was one of the greatest privileges of my life to be able to assure them that, due to a brand new law, their children were guaranteed coverage.
I spent around two years surviving solely on cash assistance (approximately $200/mo) as a source of income, along with food stamps and was able to get the comprehensive medical care I needed to properly diagnose and treat my illness. I lived with my sister and helped take care of my newborn nephew. But I was still unable to get a job because due to income limits and asset limits the second I received my first paycheck, I would become ineligible for government assistance and my health insurance would be terminated. As I mentioned, most jobs would not provide insurance for 90 days, and in that period, without medication and doctor visits, I would become too sick/disabled to work. During this period, on March 21, 2010, the Affordable Care Act was signed, but most of its components, including the government healthcare exchanges, didn’t go into effect until 2014. In the meantime, I found a loophole in the system; I got into graduate school, which provided me with health insurance. Pennsylvania Senator Patrick Toomey recently referred to people with pre-existing conditions as “house[s] after [they’ve] burned down”. In the span of four years, this burnt down house, with access to proper medical care, received two masters degrees – social work and human development - and worked as a social worker in several preschools and a children’s hospital; all in Toomey’s home state of Pennsylvania. I am proud of the work that I did academically and professionally during that time, and it was a privilege to work with and help the children. It was only possible due to the Affordable Care Act. I was able to get coverage through school and my health plan was unable to deny me for having already "burned down".
We’re all susceptible to being erased by the swipe of a pen – of moving to the margins at best and to oblivion at worst.
Ironically, my social work internship at the children’s hospital meant that I professionally interacted with the Affordable Care Act every day. The provisions for children under 18 went into effect immediately, even though the rest of the law was staggered. Every day I had parents/caregivers in my office worried that their child would not have access to insurance when they turned 18 due to pre-existing conditions or lifetime caps. It was one of the greatest privileges of my life to be able to assure them that, due to a brand new law, their children were guaranteed coverage. When I was a kid, in the back of a beat-up minivan, I’d stare up at the sky on long drives and dream of exactly the life I’m living now. I get to read and write and learn in school every day, and hang out with young kids, and work to make their lives better and their voices heard. I’m becoming an expert in my field, while also managing to make a difference in the world and fulfill every childhood dream I ever had. I’m currently getting a Ph.D. in Child Development in Chicago. At 28, I got on my first airplane ride, headed here with nothing but two suitcases and the dream of a different life. I am happy. I am fulfilled. I am satisfied. I am whole. And I am as healthy as I can possibly be.
Then the future that I took for granted was suddenly in jeopardy.
The worst-case scenario was obvious; I wouldn’t live to see the end of the Trump administration. Without medication, my heart would start to beat too hard and too fast. I wouldn’t be able to eat. I wouldn’t be able to breathe. I wouldn’t be able to live at all. And quietly, eventually, I would cease to exist. Besides a few people, who would never be the same again, the world wouldn’t notice. The best-case scenario would be that I survived - got back on Medicaid/SSDI, moved back to Philly, and stayed with any family member that would take me in. I would go back to 2010-11. I’d try to forget what I learned and how I learned to be all the people I realized I could be. All the choices that were, all of a sudden, available. And I’ll still be grateful because I’d be alive, which I know is a luxury in this country. I am not unique. There are tens of thousands of us in your communities, your offices, and your town hall meetings. We were standing, or sitting, outside of congressional offices, city halls, and airports fighting for the right to exist.
Without the Affordable Care Act, we’d be gone.
We’d be out of your homes, offices, and libraries – all the private and public spaces you are used to seeing us in. We’d be relegated to the basements of relatives, shelters, Emergency Rooms, hospital rooms, the streets, or in the ground. We’d disappear and you would be worse off for it. Because everyone is better when everyone can contribute, can participate. This is true of every marginalized group. We’re all susceptible to being erased by the swipe of a pen – of moving to the margins at best and to oblivion at worst. And here I stand (sometimes – most of the time I’m sitting or lying down), defiant, planning my future like it’s inevitable instead of improbable. I’m taking a cue from that 11-year-old in the back of that minivan who knew she’d be frantically taking notes in some ivy-covered building some day. I’m proud of that girl. I’m grateful to that girl. But, I know more than that girl. I know the odds of me surviving the next four years almost took a major hit. I felt the jagged wrench pulling my existence from likely to improbable on election night. Being sick is hard. It is difficult and painful and frustrating most of the time. But being sick – experiencing symptoms like pain, fatigue, and the side effects of medication – is by far the easiest part of having a chronic illness or disability. Worse, is having to navigate a chronic illness/disability while in the current storyphoto2American healthcare system. I lost the genetic lottery when it comes to health. I’m fine with that. There are things beyond our control that I don’t spend my time lamenting. What aggravates me are the things that are in our control. It is frustrating that scheduling and attending doctors’ appointments and dealing with insurance issues has essentially become an unpaid part-time job. It is disheartening that health care expenses make up around half of my annual income. These obstacles are not some act of God. They are a part of a system that we created; that we could recreate if we chose to. The worst part about being sick, in my experience, has been being surrounded by a political debate in which one side opposes my continued existence. On my way home from work one day, I watched the Speaker of the House gleeful at the prospect of taking my access to healthcare away. On my way to class a few days later, I watched the President of the United States give a disappointed speech about how that lofty goal didn’t get accomplished. Every day, I watch the most powerful people in this country, and some of my fellow citizens, casually argue that, after they've crunched the numbers, my life is just not worth it. And, while the withdraw of the bill to repeal the Affordable Care Act granted me a temporary reprieve, we still live in a country where our most vulnerable bear the burden of arguing the case for why our lives are worthy of protection. For now, Obamacare is still the law of the land which means I’m here to fight another day. We’re all still here, continuing to make America great. But I’ve still been watching the news lately to find out when we’re all going to die.
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