Denise Reich is a patient advocate.
“You sure know a lot about your condition.”
Many patients with long-term illnesses have heard this. When it comes from a medical professional, it’s never a compliment. It’s a statement that is usually, at best, laced with disapproval.
The thing is, patients like me, who have long-term complex conditions, are encouraged to know a lot. As someone with CVID and other issues, I’ve attended seminars and patient Q&As with immunologists. There’s a …
“Do you have Ehlers-Danlos syndrome?”
It wasn’t a question I expected during an ophthalmology appointment. It was, however, one I’d been asked before. Two other specialists had suggested I might have connective tissue issues, but nothing had ever come of it. All I could tell my ophthalmologist, then, was what I’d said before when it had come up: “No, not as far as I know, but I’ll ask about it.”
They’re very easy to spot. Sometimes it’s the crisp, brand-new lab coat or the shadows under their eyes. Often it’s announced in large letters on their ID badge. Or the badge is hidden, which is also a tell. If they’re trying to avoid being spotted, they’ll usually say they’re “working with” my doctor, as though I can’t figure out what that means.
Well, hello, resident doctor.
I see a lot of you …
There’s a particular bit of conversation I hope never to hear when my doctors are discussing surgery or testing. Not the details of the procedure. Not the possible outcome. Not the pain (and let’s be real, we all know “some discomfort” is actually “pain”). It’s the post-op directions that pose a conundrum: “You’ll need someone to drive you home.”
Nothing sparks dread and uncertainty for me like that statement. It’s a …
Oh no, it’s a doctor hopper. You know who I’m talking about: the patients with twenty previous doctors documented in their chart. The ones who took years to be diagnosed. The ones who still have not been diagnosed, but insist something is wrong. They’re just jumping around until they get their way, you seethe.
Really?
Every doctor’s appointment is a commitment of time and money for a patient. I think I speak …
I took a deep breath. The medical assistant who was checking me in for a video appointment was trying my patience. I was trying to explain, once again, that no, I really didn’t have HNSHA due to triosephosphate isomerase deficiency. The rare condition had inexplicably been added to my problem list in my electronic health record, and it was proving impossible to remove.
”The only person who can remove it is the one …
“Go have a seat,” the receptionist at the imaging center told me, gesturing to the waiting room. It was a close, poorly ventilated space, and several of the chairs were already occupied. I turned back to the receptionist.
”I have a primary immune deficiency,” I patiently explained. “I spoke to the scheduler about this. She said I could wait somewhere isolated.”
”This is what we have,” the receptionist said indifferently and turned to …
It seemed like an innocuous tweet. It was just a doctor, somewhere on Twitter, declaring that it was important to learn to quickly ascertain if patients were “sick or not sick.” It was sentence; perhaps two. It spoke volumes.
He was not suggesting that doctors needed to learn to quickly assess severity; to triage for treatment priority; to know when to send a patient to a specialist. Nope. It was “sick or not …
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