Losing Insurance With AS
A few years ago, I worked full-time as an editor and community manager at the corporate location for a major wellness company. Ironically, this job nearly killed me (okay, this is slight hyperbole, but I have never, in my entire life on earth, felt worse physically, psychologically, or mentally).
It wasn't the right job for me (I take accountability for this) and I certainly wasn't the right employee for them — and yet I spent a few years there, commuting back and forth between states for hours and hours each day, my body locked into an evil swivel chair.
My pain was maxed out
I felt like all the autonomy and light and hope was pooling out of my body, and by the end of my time there I could have checked off the hypothetical "100" box on the pain scale (the pain scale only goes to 10). Brain fog, despair, pain, immobility, immeasurable fatigue entombed me. I was falling apart.
The company wasn't very progressive, and so I wasn't able to remotely work and the hours we all did keep were unhealthy at best. So much for wellness, right?
But I did have health insurance
The silver lining? I learned new skills, became a better editor, learned what I didn't want in my life, unlearned the idea that I must work to the bone in order to be valuable as a human, and, oh, I had health insurance. I used that glorious, beautiful insurance to find two rheumatologists for two opinions when securing my diagnosis. I also used it for the biologic that I was on (which I have since stopped taking).
I had to leave
I left the job because I had to. My body (and my mind) was deteriorating from AS, inflammation, and brain fog. I began limping. I was in searing pain all day and falling asleep everywhere: At my desk, while peeing, on the bus back home. I quit to pursue a full-time freelance writing career, which halved my income and eliminated my health insurance. I am privileged to have been able to make this choice — but it wasn't easy. I desperately needed control over my schedule and my body. I needed to be able to move freely, to exercise and stretch mid-day, to see a doctor when I needed to.
Losing my insurance was (and is) hard. I still don't have it back, so I've been paying bills by mail — paying the minimum I can. Since I'm not on a biologic, I don't have to negotiate the payment for that, but I do pay for a prescription NSAID.
Quitting was good for me
As if by some lucky stars that crossed overhead, my body changed once I quit. My pain levels drastically decreased. My brain fog slowly went away. My mobility came back. I was able to wake up, do yoga/stretch as needed (rather than run (hobble), back ablaze, through the New York City subway system then onto a bus which would sit lurching in traffic until it arrived in New Jersey).
I was able to eat better. Sleep as much as I needed. I was able to swim. To meditate more. To not have to live up to what I (frankly) could not live up to at my old job. I couldn't be "on" for 50+ hours per week on top of commuting three hours per day. I failed. I failed that — and that's okay by me.
My budget is tight, but it's worth it
So I've had to budget accordingly. I pay out of pocket for Diclofenac. I pay for my swim studio. And I pay bills in the tiniest increments. I try my best. I fear my AS getting worse precisely because I don't have insurance (which is — yes I've checked — double the cost I used to pay, with much higher deductibles). The insurance system in this country is broken. Our priorities are nowhere to be found. People live in misery without this basic human right.
So I try — every single day — to give my body the love and space and movement and nutrition it deserves so I can stay ahead of this disease. So far it's working, and I'm grateful for that.
Does reading AxSpA patient stories help you in your journey?