I have spent most of 2017 writing long-form non-fiction pieces concerning flaws in the American healthcare system, often attempting to communicate why we, as a country, shouldn’t embrace changes that would severely limit access to care for chronically ill and disabled citizens.
Most words, I fear, were skimmed or disregarded; even by individuals who had offered support in the past. One by one, friends have become strangers when asked to share my articles or take simple political action that will enhance my life and the lives of those around me. The common phrase “if there’s anything I can do…” has lost all meaning.
At first, I asked myself what I’d done to push them away, but quickly uncovered a more pressing question: why do I feel compelled to argue the value of my life in public?
My experience with the American healthcare complex varies wildly from the midline. For instance, when I entered treatment for a locking knee in late 2016, I hoped the constant excruciating pain and my inability to walk would guide doctors to a quick solution. Instead, I was booked for multiple office visits, subjected to many years worth of radiation, and eventually, offered a slot on the surgical calendar in February.
I suspect that doctors would take reports of discomfort far more seriously if my body wasn’t broken by design.
On November 9, 2016, in the midst of this struggle, I wrote a lengthy email addressing a former friend who had expressed anger at rising insurance premiums. I told the story of becoming an unofficial standard-bearer for the often-maligned Affordable Care Act, not because insurance premiums decreased in the law’s wake (in many cases they didn’t), but that I could access care after struggling with chronic pain, frequent joint dislocations, insomnia, CPTSD, and a plethora of other conditions for over a decade, mostly alone.
A few days passed. I expected understanding, and cautiously opened their response upon receipt.
“It’s ludicrous the way things work now with health care,” they wrote. “You can’t even find out what things are going to cost in advance. So much waste and abuse.” To take these communications at face value, I should’ve replaced economic principals with Trump’s campaign rhetoric, and trusted Republicans to take care of the sick, poor, and disabled. “I hope that opening up the market will bring good opportunities for everyone including for higher risk patients… If those don’t materialize, then they have indicated that there will be state based high-risk pools.”
I closed our discussion with what I believe is a kind response. “I’m concerned that you’ve supported policies that, whether intentionally or not, have undermined my quality of life. And I’m asking now for your support to ensure I don’t suffer further as those policies are implemented.”
They offered to advocate for “more appropriate change,” if the administration didn’t follow through on healthcare protections similar to the ACA. I wrote them again on the morning of January 12, 2016, as the Senate prepared for its storied vote-o-rama, with a reminder of their commitment.
As of this writing, I’ve received no response.
Throughout this conversation, I’ve been exposed to all manner of abuse because I asked former friends to make good on a promise. I’d like to put this chapter behind me, but I can’t deny that my outlook on the world has changed.
I’ve come to understand accessibility through a personal lens, how to immediately separate true friends from followers, and how far some will bend the truth in order to feel morally justified.
I won’t apologize for politicizing my health needs when I’ve been provided no other option.
If I left you behind, there’s a good chance you preached the ideals of personal responsibility at expense of the underprivileged. You might want to take a look at those principals yourself, and accept responsibility for the way you act.