The day the Senate voted on a bill to repeal the Affordable Care Act I walked through my day with every muscle in my body taut with anxiety. I checked Twitter regularly, hoping for some clue about how the vote would go. I went to therapy and fretted about the vote and what it might mean for me and my friends. And I had a few small seizures. When the bill failed, I nearly shook with relief.
The stakes for me every time Congress tries to repeal the Affordable Care Act are very high. My medical bills are significant – over $100,000 in the last 8 months – but are covered almost entirely by Medicaid, which I am eligible for thanks to the ACA’s expansion of the program. Repeal would mean the possible loss of coverage, although my home state of Vermont has always had some form of expanded Medicaid coverage. Almost every healthcare bill has had reductions in Medicaid funding, however, meaning that such coverage is at risk.
Without good insurance, I would not get the care I need. The medications that keep me semi-functional would be financially out of reach. Since several of those medications control systemic inflammation, my risk of heart attack would rise. I’m lucky – none of my conditions are immediately life-threatening. But make no mistake: losing health insurance would be disastrous for me and my family.
The intense stress every time healthcare “reform” comes up in Congress worsens my stress-related conditions. My seizures get more frequent, my migraines get worse, my rheumatoid arthritis flares. It doesn’t feel like “politics,” it feels like a personal assault on my well-being. But I don’t have the luxury of stepping back and ignoring it. It’s a fight for my health, my life. I need to be involved and support those on the front lines (protesters in D.C., healthcare advocates lobbying Congress, and others who are showing up in various ways).
In large part because I was born white to well-off parents, this is the first time I am feeling the intense stress of a government trying to take something away from me. (There have been some attempts to erode women’s reproductive rights, but none that have reached the attack-of-the-month status.) I do not have to fear that I will be stopped and killed by a police officer. I do not have to teach my children how to survive in a world that is afraid of them, like mothers of color do. I have an education and resources and knowledge that allow me to navigate the healthcare system – and the relative luxury of having the time to do so.
This experience has hammered home the reality of white privilege for me in so many ways. My struggles with health are very real, and very draining. There’s never enough money (especially since I can’t work reliably and am still waiting to see if I’m eligible for disability coverage), but I have a community of supportive friends and family, a roof over my head, and enough to eat. I have the time to support activism, and the education and skills to do so. These things are privilege. And I intend to wield them like weapons.