Today, the Senate proposed a revised version of a new health care bill that makes me want to run for some hidden woodland area and never return. I literally had the thought that maybe it would actually be better if I killed myself than live through another four years of health coverage trauma.
Don’t worry. I’m not having suicidal thoughts, and I definitely want to see what else life has to offer. But I do worry about my well-being. A few years ago, I was focused on the planet and what we could do for the environment for the sake of public health. And while I’m still passionate about those issues, it’s hard to be focused on the Earth when I can’t even guarantee my own life’s safety.
I Make Pre-Existing Conditions Look Easy But They’re Not
I make Type 1 diabetes look easy. I function just like everyone else. I go to work; I have fun; I sleep; I make money; I love; I live. But there are days when I go to work or function like everyone else, and I feel like crap. This is no different than any other mental illness or chronic disease. No one else knows the pain I feel, and I don’t want people to think I can’t perform at the same level as others.
And yet with the health care bill proposed by our current Senate, I have to wonder if I will be able to continue to function at the same levels as others. Will I so easily be able to hide my condition? Will I so easily be able to hide the pain? I can’t count the number of interactions I’ve had with colleagues while experiencing low blood sugar or high blood sugar.
I’m too embarrassed to say I can’t talk to you right now because my mind can’t function because my blood sugar is dropping because you know I have this incurable disease that’s not my fault. Or I can’t understand what you’re saying because my mind is shutting down from high blood sugar, and all I can think about is falling asleep into a possible coma. And with the advancements in technology, these moments are few and far between. So much so that I can lie about how I’m feeling and pretend everything is alright when it’s not.
I Pretend Everything is Okay But It’s Not
But what happens when I can no longer afford those advancements in technology? What happens when health insurance companies can once again deny me solely for the fact that I have an autoimmune disorder that has no cure, and scientists don’t really know why it exists? I try, but without a cure for my condition, there is nothing I can do but manage each day as best as I can.
Obamacare is not perfect, but it gave me something no other health bill did – it said I am worth supporting and that I have a right to live. That was monumental. Because in the era prior to Obamacare, people like me didn’t matter. We found loopholes so we could survive but the system as a whole never had our backs. And it almost killed me. I was diagnosed with Type 1 diabetes on April 24, 2009, less than a year before the Affordable Care Act passed, and four years before it was fully implemented.
In those four years, I experienced two life-threatening seizures because my insurance wouldn’t cover the medical devices I needed to better manage my condition. And while I don’t often say it, it’s very possible I would have never awakened from those seizures. It’s very possible I would have died. The brain and the body can only take so much. My life is on the line every day, and while I may make it look easy, it is not.
It Is Not Easy
So, the fact that Congress is about to repeal all of that for the sake of saving face is something I will never be okay with. This health care bill means many different things to people, but for me, it will always represent the idea that people like me are not worth fighting for, that people like me don’t matter enough to find a better way.
And because I am a survivor, I have a contingency plan. I refuse to believe that even if our country’s representatives don’t support me and one-sixth of the economy that I can’t find a way to manage. But at what cost? I’m finally at a place where I am financially stable and paying off thousands of student loan debt. I have an actual savings account for the first time in seven years, but I joked (although not really) with a friend recently that my savings is actually going towards future medical expenses to afford my diabetes.
I have a back-up plan, and I’m lucky that I can afford to have that. But what about those who can’t? What about life events we can’t control? There have certainly been moments in my life where I wasn’t sure where my next meal was coming from. If someone can’t afford food, how are they ever going to afford medical expenses? And if they get into insurmountable debt from those medical expenses, how will they ever get out of it? How is that really helping the economy?
I Want to Say My Disease is not a Limitation But It Is
Just this past year, I’ve thought about changing my life path and looking into going into business for myself. But how can I ever consider such a plan with an interminable chronic condition? The whole reason I got into employer-sponsored insurance was so I could survive in a messed-up health coverage system. And even that system is no longer a guarantee.
So, does this mean I cannot follow dreams and find new creative endeavors because I have a disease that I said would never keep me from pursuing my own path?
As a creative and autonomous individual, this realization is heartbreaking. In this current political climate, I can’t really convince myself this is not the case. But I refuse to believe that politicians who do not understand nor care about my circumstances should dictate my destiny. That’s why I will continue to fight and advocate for those with pre-existing conditions, especially those with Type 1 diabetes.
— JDRF Advocacy (@JDRFAdvocacy) July 13, 2017
Remember What We’re Fighting For
We did not ask for this life, but we have the right to make the most of it. And I refuse to give into the idea that one health care system will take us down. But it certainly does its damage. And that’s why I hope that people, especially our representatives, will remember what we’re fighting for, and that political gain is not the end goal. It’s never going to support inspiration and innovation.
But make no mistake, if this bill passes, I will join in the millions of tears that will be shed. I had hoped with the House’s disappointing mistake that my emotions had experienced enough. I may not be as shocked as I was then, but I will be disappointed. I will be heartbroken, and I will wonder about my own survival. But I won’t lose hope.
How can I? I’ve come so far, and I want children after me to go even farther. I can’t give up, but this country certainly doesn’t make it easy these days.