Who Gets Left Behind as We Return to Normal?
Long-haulers have also struggled to find doctors who believe them, an experience that people like Hill, who has rheumatoid arthritis and other chronic medical conditions, know well. It took years for Hill just to get her diagnoses and to find doctors who understood what she was going through; her recent move to Connecticut has meant shes had to find new doctors. Shes on Medicare, so its been particularly challenging to find an in-network pain management specialist who will prescribe her the medications she needs. The opioid crisis has made many doctors mistrustful of patients who ask for pain medications, leaving people suffering from chronic pain in limbo. Her options are either to pay $400 out of pocket for an out-of-network doctor or to endure daily pain. These kinds of challenges are now becoming more familiar to long-Covid patients, particularly given the lack of certainty around the conditions causes and the gamut of strange symptoms it generates. A lot of doctors are trying to hold on as tight as we can to that medical expertise that we thought we had, said Lee. Instead of dismissing and invalidating their patients, he thinks that doctors like himself should accept the limitations of their knowledge and try to seek out what might actually be going on.  In late February, the National Institutes of Health announced a $1 billion, four-year project to research long Covid. But some with chronic conditions and disabilities resent that little-studied and understood diseases like postural orthostatic tachycardia syndrome, or POTS, a blood flow disorder that causes lightheadedness and a rapid heartbeat, and ME/CFS were dismissed and ignored until long-haulers began reporting symptoms that resembled those diagnoses. For Hill, who also has POTS, seeing major research projects on these conditions being funded and reported on feels bittersweet. As she explained, There is that frustration of being constantly ignored, and then it feels like somebody else comes up with the same problem, and theyre listened to. And that can be very aggravating.  On the other hand, Hill said, historically a great deal of disability rights progress has occurred when there have been large influxes of disabled people at one time, such as after World Wars I and II. Covid-19 has been no exception.