Wishing doctors looked at the whole picture when it comes to healthcare

May 5, 2023

by Megan Marjorie

Embarrassment sank deeper with every syllable — as In pure frustration. I dumped the history of “everything that has been going wrong“ to my one of my favorite doctors, my rheumatologist. 

Between increasing lung symptoms, and lung scans looked like it could show disease progression. Stomach pain , nausea and vomiting that had left me basically unable to eat or drink for 3 days. I had non-stop infections due to the fact my CVID (Common Variable Immunodeficiency) isn’t being treated. 

I told him EVERYTHING. In desperation I laid everything at his feet, unsure if any of these problems even fell under the category of rheumatology 

He is a PHENOMENAL physician, and did all he could to help me — ordered a lung CT, and got me a referral to a new pulmonologist in their system. But he then reminded me: he is only trained to assemble “his part of the puzzle“, that specialists focus only one part of the body. They know a lot about their allotted “piece of the puzzle“ but they don’t work on problems outside of their field.

I think that is the biggest flaw in how modern medicine tackles and views disease in general.

I feel like doctors see each piece of your health as a piece of a puzzle, and only people trained in certain areas are allowed to put curtain pieces of the puzzle together, and when the allotted team has finished their “part of the puzzle“ (If the time ever so comes) then EVERYONE can come together and assemble the puzzle in its entirety, and see the full picture (your health) as a whole. 

But under no circumstance is anyone allowed to try to put together the whole entire puzzle by themselves, or “help“ anyone else with their puzzle. You’re only allowed to look at the puzzle pieces you have been “trained“ to look at. Any doc who tries to view the puzzle as a whole is stopped because “medicine doesn’t work that way” which often leaves doctors so focused on their “corner“ that the BIG picture, like my situation, a multi-systematic rare disease is missed. 

I usually leave appointments with my rheumatologist feeling lighter, but I left that appointment drowning in frustration –not frustrated at him, but frustrated in the medical system as a whole.

I was frustrated with my complex body, with complex symptoms.

I was frustrated that I may be a “puzzle that will never be solved“

I was frustrated that for the rest of my life there is a huge possibility that cardiology will be in their corner, immunology in another, neurology meticulously working to the side, hematology and oncology waiting for the worst to happen in another corner, GI neglected on the bottom until new pieces appear and rattle its stability. Rheumatology and Pulmonology looking under every crevice, and praying to whatever higher power they believe in, that the pieces will begin to fit together.

None of the doctors actually talking to each-other,  none of them looking for answers in other places… all just focused on putting together their part of the puzzle. And the big picture of my health will forever be a scattered incomplete puzzle . 

Through Global Genes, I actually learned that having a “complex care coordinator“ is more than just a beautiful concept, but an actual reality that I’m trying to have come to fruition. Through your palliative care doctor, you can have them be your “referee” between specialists. Making sure the doctors are speaking to each other, making sure you understand what the doctors are saying, and that you’re getting the best treatment possible.

I got that care established, and it finally felt like I wasn’t alone, like there was some hope. But now once again battling multiple systemic issues, with unclear answers. I feel like a puzzle with pieces scattered across the table and floor.  How are you ever supposed to “come together“ and be treated fully and wholly when those who are trained to heal you aren’t trained to search for the whole picture?

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