Imagine you are brushing your hair. As you reach up, your right collarbone slides away from your shoulder. Pain radiates up the side of your neck into your head. You put on a neck brace, though the collar triggers additional painful jaw tension.
As days pass, the pain expands, wrapping around your shoulder, chest, and back, pulling on your ribs, your shoulder blades. By the time you arrive at your next physical therapy appointment a week later, your jaw muscles are hard stones, both shoulders and several cervical vertebrae are out, ribs are displaced, including one poking out from under your shoulder blade three-quarters of an inch.
Your specialized physical therapist does their best to safely reset everything, massaging the worst of the muscles, though, even with an hour, there鈥檚 never enough time. She maneuvers the rib back into place because she must. You gasp. It feels like being stabbed.
This injury happened seven weeks ago. I am still recovering.
I have two types of a rare connective tissue disorder called Ehlers-Danlos syndrome — hypermobile and vascular — meaning my collagen is weak or partially absent. My symptoms are legion, but among the most debilitating is joint subluxation, or partial dislocation. I attend physical therapy twice monthly and routinely have 6 to 12 bones that must be reset.
Five weeks ago, I was informed by my physical therapist that Colorado was making 2% cuts to Medicaid reimbursements for providers and that my therapist may be unable to continue seeing Medicaid patients and remain sustainable. This is a consequence of the , the Republican tax measure passed last year by Congress that made the biggest cuts ever to Medicaid.
Just 37% of physical therapists in Colorado accept Medicaid (compared to 80% of general practitioners). So there is already a shortage. As Colorado providers cannot charge Medicaid patients directly — to protect patients — I could not pay the provider directly even if I could afford the out-of-pocket costs (which I can鈥檛). There are no other specialists in my area 鈥� seeing a non-specialist would risk well-meaning but dangerously harmful care.
Despite claims by my U.S. representative, Gabe Evans, that my Medicaid and access to care would be unaffected by H.R. 1, I now have proof to the contrary.
So, imagine the scenario I described, but now imagine not being able to get help, living with a rib jutting out of your back, a neck that continues to get tighter and tighter. If I lose access to care, it is not a question of if I end up in a wheelchair, bedbound, unable to live independently, but when. I am terrified. I am exhausted and terrified.
People like me are often invisible. Our conditions are under-researched, still mysterious, perhaps unknown to most providers altogether. We鈥檙e told we are too unwell to work, but must show up for the full-time job of navigating and coordinating a litany of medical providers, mountains of medical and governmental paperwork, traveling to and from specialists, trialing new medications and managing side effects–all while buried by our symptoms. You don鈥檛 see us. But we are here. We, too, are human. We matter.
Medicaid is our health system鈥檚 foundation — as the H.R. 1 cuts take effect, they will bring devastation to healthcare for all Coloradans. More providers will struggle, and more people, whether on Medicaid or insurance through your employer or the ACA, will lose access to care.
Though just beginning, these cuts threaten all of us. I am the canary and I am here to tell you the mineshaft has been poisoned and is verging on collapse.
I say this in grave seriousness, without exaggeration or hyperbole or partisan inflation. It is a plea from someone looking down the barrel. Please, do not abandon us to die.
People like me are often the opening sacrifices in situations like these. They come for us first. But make no mistake, they are coming for you next.
Lydia Cruz is an artist and writer living in Greeley. She manages many chronic medical conditions, including both Vascular and Hypermobile Ehlers-Danlos Syndrome.
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