I am exhausted.
Sure, it could be from living with five different autoimmune diseases. I was diagnosed at the age of 15 with type one diabetes, a disease that requires round-the-clock care. You think deciding where to eat dinner is tough? People with diabetes make 180 extra decisions a day, according to a study by Stanford Medicine. It’s a precarious struggle between highs and lows, with any one wrong move potentially resulting in serious or deadly complications. My autoimmune diseases all result in a metaphorically heavy mental load that I’m forced to carry with me, day-in and day-out. It’s all tiring, but that’s not the reason for this particular exhaustion.
Well, if not the diseases themselves, the exhaustion could definitely result from my unending healthcare costs and incessant battle with my insurance. I recognize the incredible privilege I live with by currently having employer-based, “good” health insurance. However, the insurance still results in my savings being wiped out every year to pay off my deductible. Every month, I spend over $300 out-of-pocket for doctor’s visits, medications, and over-the-counter medications required to manage my health.
But that’s not it either.
No, I am utterly exhausted from having to explain why I deserve to exist, why I deserve to continue to live in this society. Since I turned 26, I’ve had to fight every step of the way to survive despite the healthcare system, despite my insurance plan, and despite pharmaceutical manufacturers best efforts. I am one in four people with diabetes who have rationed their insulin due to its exorbitant list price. I’ve been uninsured and turned to the medical supply black market to obtain my much needed insulin pump supplies.
And now I watch my rights continue to be threatened during the U.S. Supreme Court nominee hearing.
It is terrifying to watch people treat the U.S. Supreme Court nominee hearing like an exercise in political theory, with people betting on who wins and who loses. Detached commentary fills the airwaves, often neglecting the very human impact this hearing disproportionately has on the most vulnerable communities, like disabled, BIPOC, LGBTQ+, trans, and undocumented folks.
We can’t forget that this Supreme Court hearing has national implications about whether people will be legally and systematically denied basic human rights, specifically with the Affordable Care Act (ACA). Human rights should not be up for debate. Healthcare should not be up for debate. My life should not be up for debate.
But it will be, regardless of who is nominated to the Supreme Court –- beginning on Nov. 10, the court will begin to hear oral arguments in California vs. Texas, a case that threatens to unravel all of the protections the ACA has afforded us.
Though the ACA is not perfect, I still live in absolute fear of the aftermath if it is struck down. It’s no secret that there is currently no other comprehensive health care plan. That leaves me and so many people with disabilities preparing for worst case scenarios and wondering how we’ll survive. If this sounds extreme, that’s because the reality is. For if lifetime maximums, deniable pre-existing conditions, and waiting periods are again instituted, there is no way I could reasonably live here.
If you won’t fight for my life, perhaps you’ll consider that more than one in four adults would be ineligible for health insurance should the ACA be struck down. In 2018 the Kaiser Family Foundation estimated that 27 percent of non-elderly adults in the U.S. had a “declinable pre-existing condition,” a condition that would make someone uninsurable in the pre-ACA days on the individual health insurance market. And even if an individual never needed the health insurance market, the ACA’s protections against lifetime maximums, waiting periods, and for children up to age 26 are all at risk.
This is a moment that requires each of us to raise our collective voices; no American is exempt. We’re lucky to have both U.S. and state legislators in Connecticut that continue to advocate for the ACA and the protections it espouses. However, this view is not unanimously shared across the U.S. We cannot become complacent in this fight; let’s keep making noise to ensure the ACA isn’t struck down.
Though every part of my being is bone-tired, I can’t stop advocating, not while my rights and the rights of so many continue to be systematically struck down. Though the weight of my disabilities can be overwhelming, I won’t stop advocating for my community and the people I know who deserve so much better from this society. Nor will I stop advocating for you, the reader, or you, the person who has no current pre-existing condition and believes the ACA doesn’t impact you. For I know how easy it is to wake up one day and your life never looks the same.
Though I am exhausted and most won’t be willing to join in, I will keep up the good fight to ensure you are never denied the healthcare rights that seem to elude me.
Kristen Whitney Daniels of Shelton is a chapter leader of CT #insulin4all.