I visit my pain doctor on a monthly basis. Sometimes I get trigger point injections ― shots of lidocaine into my muscles to stop them from spasming, a frequent occurrence due to my degenerative collagen disorder. Hypermobile Ehlers-Danlos syndrome also causes my joints to frequently dislocate, randomly and without warning, causing severe and constant pain.
But the main reason I make this 40-minute drive every month is to pick up a paper prescription for my pain meds; they’re considered a controlled substance, so the law forbids me from refilling them digitally. And every time I make the trip, I’m reminded that even the medical world isn’t designed for sick people like me.
It starts when I pull into the parking lot and decide to leave my wheelchair in the car, even though I’d obviously rather use it. It doesn’t matter whether my hips are dislocated that day or not; I never use my wheelchair here.
The building has an elevator I can take to the second-floor office, but it shudders and judders the whole way up, so I use the stairs. I’m then met with two heavy glass doors, and if I were sitting in my chair, the handles would be too high to reach, the doors too heavy to hold. The fact there isn’t an automatic door opener here has always struck me as strange.
In the waiting room, there’s no space to park myself when seated in my wheelchair; I’d end up inevitably being tripped on. Plus, the doorway between the waiting room and exam rooms is so narrow that wheeling through would be an impossibility (and no automatic door openers here, either). The exam tables aren’t equipped to motor down to my level, which means I’d have to stand up out of my chair to clamber onto the table. The entire experience would be an effort in exhaustion and inaccessibility, so I tough it out on foot instead.
In many ways, I’m fortunate I can decide to leave my wheelchair in the car, because a depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine. As a partially ambulatory disabled patient with a host of chronic health conditions, I regularly run into what feels like a never-ending gamut of issues every time I visit one of my practitioners. And I’m far from the exception to the rule.