When forced to figure out how you can afford to be healthy, you tend to just give up.
People rarely talk about the fear, the blind terror that is living with an untreated disease. Today, a group of privileged, entitled politicians will decide whether or not to plunge me back into that fear.
For context, I have a disease called Hereditary Angioedema (abbreviated HAE) that causes random episodes of mass swelling and anaphylaxis. It looks like an allergic reaction, but it is not caused by histamine and is not in response to any food or drug. It just happens. Without treatment, it is debilitating and terrifying.
Because of this and other health problems (asthma, pelvic congestion syndrome, inguinal hernias as a teenager), I spent my whole life before the ACA passed either begging my insurance provider to cover claims they routinely denied, or I couldn’t get health insurance at all. The only healthcare I received was critical care for anaphylaxis in an emergency room.
As I got older and the severe episodes became more frequent, I became fearful.
I was afraid to be alone in case it happened. I was afraid to be with people for the same reason, the massive swelling freaks people out. I was afraid to sleep. I developed extreme anxiety and depression.
6 years ago, I had one of these random anaphylactic episodes while driving alone, out of town. I managed to get myself to an urgent care clinic, but there’s very little an outpatient facility can do to treat HAE, and I needed an emergency room immediately.
So as I lay there, struggling for air, about to be intubated, the doctor told me “We’ve called an ambulance to take you to the hospital”.
And I began to cry and gasped out “No, please, I don’t have insurance!”.
Just… try to let that sink in.
I didn’t know where I was, I couldn’t breathe, I was completely alone, yet most overwhelming was the thought of having to pay for an ambulance, emergency room, and hospital stay.
In a moment when I should have been focused on simply trying to force air into my lungs, I had to consider how I would pay for the treatment needed to save my life.
Now tell me I should have just planned better, should have saved up for a potential exorbitant medical bill because my body doesn’t work right.
Tell me it’s just a matter of budgeting.
Say it’s my fault for spending money on anything except necessary, life saving care.
Having to afford (or not afford) to be healthy is…. crippling in ways that can’t be fully explained.
When you know that the cost of a routine checkup for asthma to get your inhalers refilled is around $500 out of pocket (spirometry test, appointment with doctor, and the inhaler), you tend to sort of… skip those appointments. Even if you’ve budgeted, even if you’re fortunate enough to have the money to pay that, it’s still just…. demoralizing.
You had no say in being born broken, you have no choice in having to get treatment, and having to pay so much just to stay breathing is literally debilitating. It makes you feel like you aren’t worth the effort and you don’t deserve healthy.
Try to imagine what it would feel like if your weekly grocery bill was $500 dollars. Not because you splurged, just if that were what it cost for basic necessities to keep your family healthy and alive.
How overwhelmed might you be? How depressed might you become? How worthless might you begin to feel because you have to pay so extremely for something you must have to survive? What corners would you begin to cut, maybe not buying things you do need to be healthy, but can technically survive without?
Healthcare will never be a luxury, and if you think it is, you are beyond out of touch, you are willfully ignorant and arrogant.