Healthcare Is Rarely a Walk in the Park
When it comes to healthcare, I’ve had remarkably good luck.
There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A classic case of transference. I was so afraid of my upcoming spinal fusion that I viewed my surgeon with not only distrust but thinly veiled hate. He did nothing to deserve it, but I was 8 years old and utterly inconsolable.)
All my life, I’ve been blessed with incredible doctors. I’m not exaggerating when I say that, if it wasn’t for them, I wouldn’t be alive. But there are always exceptions.
Early last month, in the midst of a seating appointment, I injured my arm. There were no lifts available, so my dad had to manually transfer me between chairs. At one point, my arm fell out of position, twisting my shoulder.
You can see where I’m going with this.
At the time, it didn’t seem like a big deal. I assumed I just had to let the muscles heal. Over the next few weeks, the pain faded considerably; the soreness, while persistent, was manageable. I seemed to be on the upswing.
Then I felt something pop.
To clarify, my body “pops” all the time — especially my left hip bone, which is perpetually out of socket. Again, not a big deal. But the pain that followed was significant, far worse than anything I’d experienced previously. I favored my shoulder the rest of the day, hoping the issue would resolve itself.
The next morning, I was sick with pain, unable to think clearly. While Advil took the edge off, I was afraid my wheelchair was the culprit — the pain abated when I was lying down or otherwise not in my chair. I asked my caregiver if she could take me to urgent care, just to be on the safe side.
The events that followed were chaotic. We went to the wrong clinic, only to discover that, for some reason, urgent care doesn’t offer X-rays. Thankfully, the clinic I went to — the wrong clinic — was able to fit me in on short notice.
My doctor seemed unused to seeing disabled patients. There was an awkwardness to him. An uncertainty. He flitted around me, uncomfortable with my chair, asking questions with an almost painful hesitancy. He kept referring to me as “not your average Joe.” When X-rays inevitably came up, he expressed confusion as to how I could possibly get into an imaging machine.
I don’t expect every medical professional to be versed in rare diseases. I’m used to fielding questions and am happy to share my knowledge when and where I can. In general, I prefer doctors who are quick to acknowledge their ignorance. If you’re unfamiliar with my condition, that’s fine. All I ask is that you treat me as the expert on my life.
I’m sure that doctor meant well. And I appreciate his willingness to see me on such short notice. But I left the clinic feeling unheard. Was it the “average Joe” comments? His dismissal of my pain? Or was it the niggling suspicion that, if my caregiver had been with me, the appointment would have turned out differently?
I left the clinic with instructions to take Aleve twice daily for a week. I was exhausted, and not just because the pain had left me drained.
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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