COVID-19 Proves That Accessibility Was Possible All Along—And Should Be Here to Stay
Before COVID-19, my chances of being able to keep a doctor’s appointment on a day I was having an ankylosing spondylitis flare-up—-even if I’d been waiting to see the doctor for months—-were slim to none. It’s one of the many ironies of having a chronic illness: Sometimes, you’re too sick to go to the doctor.
If I pushed myself to get there, I was left bedridden for days after. If I chose to respect my body’s limits, I forfeited the appointment, got hit with a cancellation fee, and often found myself on the receiving end of a snarky assistant’s attitude for throwing off the doctor’s schedule.
Enter telemedicine in the time of COVID-19
Now, due to the sudden availability of telemedicine services because the world is socially isolating, voila! I can magically access necessary healthcare from the comfort of my own home, via video or phone, no matter how I’m feeling. Having this option over the last few months has felt surreal; it’s saved me tons of time, energy, and my body’s inevitable payback when I spend hours schlepping back and forth.
Even more amazingly, telemedicine services were implemented in a matter of weeks when the world shut down and able-bodied people needed access to them. Medicare and Medicaid restrictions that previously prevented telemedicine were lifted, and insurance companies added it to their coverage without delay. (1) Which leads me to the question: When the chronically ill were requesting these accommodations for years, why were we perpetually ignored?
Our bodies demand flexibility
In the chronically ill and disabled community, scores of people are dealing with symptoms so debilitating that leaving the house can be a draining and painful ordeal—-if it can be done at all. When symptoms are at their worst, just the attempt can be dangerous, both in terms of symptom exacerbation and the possibility of harming oneself or others (pain or fatigue, for example, can impact concentration and lead to falling, losing control of a vehicle, etc.).
A common theme in our lives is that we never know how we will feel until we wake up—-and the doctors who treat us are well aware of the “good and bad days” aspect of our diseases. When my disease activity is high, I find myself unable to keep plans because of my need for rest, which often frustrates me and requires a lot of understanding from everyone in my life.
Why did it take this long?
Unfortunately, while the chronically ill are forced to accept the unpredictable nature of their symptoms and accommodate them, the healthcare system that is responsible for caring for us still doesn’t. Until now, it had never provided virtual access to care. And in light of how quickly remote arrangements were instituted in response to COVID, this seems not only unreasonable but also discriminatory.
This pandemic has unveiled that the accommodations we need in order to live with more dignity and flexibility are not impossible like many of us were told. Medical offices had the capacity to provide telemedicine, and insurers had the capacity to pay for it, but they chose not to.
Since my diagnosis 6 years ago, trying to get a doctor on the phone for 10 minutes to discuss simple blood work results has been like pulling teeth. I’ve even asked for phone conversations in lieu of visits when I was too sick to leave home and was denied. Now, a solid 45 minutes on the phone is not only possible but also paid for by insurance.
When I sought out video visits in the past, I found that they were only offered by specialists who didn’t accept insurance, leaving them inaccessible to me. But now, when healthy people are afraid for their health and their lives—-something people with chronic illness face daily—-it seems remarkably quick and easy to provide a work-around to keep them safe.
Will we see permanent change?
In-person medical visits are indeed still necessary for physical exams and bloodwork, but many doctor-patient conversations require no physical contact, removing the need for taxing trips and excessive waiting room times. These require energy that I and others like me simply don’t have to spare. Further, virtual visits benefit society at large by reducing the transmission of infections, as COVID-19 is teaching us.
I fear that when the pandemic ends, the barriers to accessing healthcare will return, leaving us right back where we started. Virtual medicine (and while we are at it, employment) should be here to stay for those with mobility issues—-and it shouldn't have taken a crisis to provide these options. I can only hope that this period of time sets a precedent since we know now that organizations do have the capacity to offer remote services and accommodations. We need only point to the COVID-19 era as proof.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?