When My Health Care Is at Risk, This Is How I Choose to Respond
Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
I’m about to inject myself with my new medication, another TNF inhibitor, hopefully one that will work more than the last version I tried. A tumor necrosis factor (TNF) inhibitor is a form of immune suppression used to treat a few severe autoimmune diseases. I am taking it in the hopes that it will calm the inflammatory arthritis that has been ravaging my 29 year old hips, shoulders, ankles, and spine, so that I feel, in every way, much older than I am.
Chronic pain does that. It makes every day drag on as if it were weeks, while at the same time placing you in a fog so dense that when you finally find a moment of clarity, you wonder where the time went.
I am at once ancient and ageless.
At the moment, I’m telling myself I am waiting for the pre-filled syringes to come to room temperature, as the instructions directed, but really I am avoiding it. I’m avoiding the pinch and sting, and the lasting burn that I know will come after. I’m avoiding the wave of nausea I can already feel waiting to ride over me; I have never been comfortable with needles.
I make rules for myself. I will do the two injections, one after the other, as soon as I am done typing out my thoughts. I will reward myself afterwards with a break from my ever-growing to do list.
No, I won’t. There is folded laundry covering the bed, and more in the dryer waiting for me.
I berate myself for my anxiety after reading the medication information booklet. The side effects are no joke, and as much as I hate to admit it, I am my mother’s daughter, and she is a world class worrier who some may describe as a “hypochondriac.”
I tell myself over and over that I won’t get cancer, or a life-threatening rash, or go into heart failure (at least not from this).
I tell myself to snap out of it and step up. I think of my husband, an insulin dependent diabetic who injects himself several times per day. I think of the quiet courage and strength that takes.
I tell myself I am strong, stronger that I feel most times. I remind myself I have been through so much worse and so much more than this small series of injections.
On Monday, in my work as an activist, I spoke at a die-in to protest the new health care bill. My family relies on our coverage that we purchase through the Affordable Care Act exchange. Our coverage is far from perfect but it provides myself and my husband (who is a kidney transplant recipient, and I his donor) with the necessary treatments we need to live.
And I am weeping because there are people in power right now who want to take even this from us.
Now I will inject the medication that costs me, even with our “platinum” plan, just slightly more per month than my parents spent on their mortgage for the home I grew up in. And I am so very privileged to be able to afford it at all. Without my insurance, the list price is over six times as much. There is no chance I could continue it.
In a few moments I will stop writing and go through the ritual of cleansing my skin and giving myself medicine that is really poison, but apparently that is what my body needs. And every second of the discomfort of the injection will be compounded by the shame I feel to be a burden on my family to have to pay for this medication at all, and the fear I feel over what will happen if the Affordable Care Act is actually replaced. The cynic in me says I shouldn’t bother starting the medication, as the potential of finally finding a treatment that works only to have to stop it or lose everything else is more than I can bear.
But bear it I will, if I must. I won’t stop fighting for my care, even when it feels hopeless. I won’t stop fighting for my quality of life, and for my husband’s right to the medication that keeps him alive, and for everyone else who is terrified right now.
Follow this journey on The Erica.
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