Do Our Doctors Shrug Out of Apathy or Are They Out of Ideas?
Originally published on Medium on Dec. 24, 2020.
One of the worst feelings when you have a rare or chronic disease is to see your doctor shrug. I feel for them. I do. With rare and chronic diseases, it’s often difficult to understand what to try next…. But is the shrug out of apathy, or out of ideas?
When did we become a nation of shrugs?
One of my husband’s and I’s favorite episodes of Buffy The Vampire Slayer is when Willow dresses up in a large heavy coat for a Cultural Costume Party (which would probably now be considered cultural appropriation), and has to verbalize her “Shrug” because the coat is too large to see her actually shrug…..
But it seems to me that not only can we not see the shrug, but we’re not even saying “Shrug” out loud any longer… just staring blankly… Words hidden behind our masks. The apathy is palpable. I wonder if the word “shrug” even crosses the mind….
Maybe this is a 2020 phenomenon, we’ve all become so numb to all of the changes that we’ve had to make. We have a worldwide pandemic — shrug. Kids need to stay home and not go to school — shrug. We need to quarantine — Shrug. We need to wear a mask — Shrug. We can’t visit family during the holidays — SHRUG. We can’t have weddings — SHRUG. We can’t visit family members on their deathbed or even have a funeral for them — SHRUG!
With a rare chronic disease, I’ve always had to advocate for my healthcare, but now it seems even more necessary in order to get answers and not just a shrug.
I recently went to a Clinic in order to ensure that my chronic back pain was in my charts and not overlooked or forgotten, so I went on a day when my back had flared a bit. Perhaps serendipity, I was diagnosed with a UTI. I was given antibiotics and told to follow up if there were further issues with my Primary Care doctor. I finished up the antibiotics, and received a letter in the mail saying that the culture was clear — and if I had further questions — follow up with my Primary… so essentially “Don’t bother us any further and a big SHRUG”.
Seemed to me that the culture being clear was odd — was it a UTI in the first place? Was I placed on antibiotics unnecessarily? If it wasn’t a UTI, then what is it?
Shrug.
I went to my Primary, and they repeated the Urine Analysis, and still saw blood in the urine. So they sent me to Urology. At my first Urology Appointment, all they did was a Urine test. Still blood in my urine. They set me up for a CT scan and scope of the bladder — I had a urine test before each of these procedures. They see nothing on the scan or the scope. Big Shrug.
In fact — this is the discussion I have with the doctor as I leave.
Doctor: “It all looks good!”
Me: “So what do I tell someone the next time they see blood in my urine?”
Doctor: “Blood in the urine is a sign of infection.”
Me: “OH! So you didn’t see blood in my urine this time?”
Doctor: “Well, if you actually SEE blood in your urine, give us a call immediately.”
Me: “But I never actually saw the blood, it was just seen in the test.”
Doctor: “Blood in the urine is common.”
Maybe I’m not understanding something, but isn’t that exchange contradictory? Is blood in the urine a sign of infection or common?
Shrug.
I don’t believe there’s a mechanism in place to have a medical professional follow up. What would happen if I don’t take the initiative and make a follow up appointment? Is no one interested in taking the initiative to determine what’s going on? How many other people are getting non answers and don’t realize THEY need to be the ones to stay on top of it and follow up?
I want to believe it’s that the doctors are out of ideas (and therefore believe there’s no issue), but the fact that there’s not a procedure in place to automatically set an appointment to follow up and resolve critical issues sure takes on the appearance of apathy.
But is it up to ME to fix this flaw in our healthcare system?
Shrug.
