My Disease is Like the Crippled U.S. Care Economy
Invisibly Eating Away at Our Ability to Thrive
It was inevitable. Looking back at the evidence — the undisclosed family history, the crooked and oversized knuckles attached to my grandmother’s petite hands as she reached out for mine, symptoms slowly coming and going like waves rushing over my body — I should have, could have, anticipated it. But, alas, I did not.
At the ripe ol’ age of 45, I was diagnosed with psoriatic arthritis, a blistering disease consuming my body from the inside out — reaping havoc on my joints and tendons. Crippling my ability to open jars or anything requiring hand strength. Walking without pain or discomfort becoming the hopes of which dreams are made. The disease pounding me with heavy, immobilizing exhaustion at random moments throughout the day — a three-alarm fire raging deep within the soul of my physical skeleton.
This is how the lack of a fully functioning comprehensive system of care attacks families and our economy as well. We see individuals from the lower and middle end of the income distribution and, from the outside, they may look just fine. But, their inability to access quality childcare, eldercare, paid leave, fresh food, or comprehensive healthcare services cripples them in invisible ways.
My body has become my own worst enemy. No one can execute the cruel, persistent, slow deterioration of physical self better than one’s own immune system gone rogue. In the trial-and-error stage of medicated support, I am searching for a remedy that will calm this internal infierno and convince my body to stop attacking itself. I am lucky to have pharmaceutical options that my grandmother did not. Psoriatic arthritis is a disease with no cure and, until recently, there weren’t even medications to coerce it into remission.
It is worth repeating: my psoriatic arthritis runs through my body attacking any hope of normalcy just like our weak crippled care economy stifles the most eager yet vulnerable individual’s hope for a content, peaceful, and meaningful life. More specifically, psoriatic arthritis attacks my body the way an uncaring economy keeps families in poverty. While its early stages are invisible to those on the outside, it ruthlessly damages my joints and tendons affecting my ability to thrive just like the lack of a guaranteed income, accessible school lunches, and affordable healthcare options do to millions of families at the lower end of the income distribution.
Care in our society has always been invisible, taken for granted. We rarely notice it and its fundamental value when we do have it, when it functions well. In fact, many older privileged white male politicians struggle to recognize the real challenges to not having access to invisible care — and it shows in their policy decisions. The invisibility of it all is daunting, aggravating, and infuriating. It is all right in front of us, but we can’t see it. We aren’t able to make the connections between how having our basic food, shelter, and care needs met makes us better humans who are better able to thrive, keep a job, and be available, attentive for our families. Why do we make it so hard on those with less access to invisible care?
We do, however, still see acts of caring and kindness every single day that make society function and the world go round. They come from our loved ones, community neighbors, and, sometimes, complete strangers. The parents who always seem to effortlessly have dinner on the table for us sharply at 6pm; who are always there driving us to an extracurricular practice or school function. A city worker who magically cleans the snow off our streets after a busy storm. The taxpayers who provide resources (however dwindling) to build and staff schools allowing us to learn and develop the next generation. Most of us take it all for granted, just like I took for granted the younger, healthier more appropriately-functioning immune system of my youth.
It is the times when this invisible care is not available or breaks down that tears at our seams, crippling our ability to function both at home and work. When daycare isn’t available or closes down, parents struggle to work outside the home for pay. When our struggling neighbor cannot keep their lawn mowed and shrubs trimmed due to untreated (maybe undiagnosed) mental health problems, community property values go down. When my psoriatic arthritis heaves fatigue over me like a warm weighted winter blanket, I struggle to work.
We notice when invisible care goes away or doesn’t exist. Yet, time and time again, we refuse to recognize its value and pay for it to formally exist among us all, to provide an off ramp for so many in our society who struggle with an invisible lack of care. If only we prioritized policy solutions to our crippling care structures like we prioritize war, military, airlines, construction companies, or the development of medical solutions to mitigate incurable autoimmune diseases.
If we had the power to motivate a majority of politicians to make the care economy a priority, we could mitigate the invisible festering inflammation so many families feel in this very moment. Let’s face it: experiencing micro-doses of stress every day from living in a society that doesn’t care tugs at the sole. Distractions of war, pandemics, and economic disasters will not go away anytime soon, but that doesn’t mean we shouldn’t prioritize caring for each other. It’s time we all got on the phone, sent the emails, went to the voting booth, and held our decision makers (and society) to a higher standard — a minimum standard of caring. If we did, we would all be better off for it. None of us can thrive without care — however invisible it may be.